The Illusion of coping…. Exploring the Impacts of Sensory issues for those with High Functioning Autism within the Workforce.

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A key component expressed by adults with HFA (and their parents) when taking into account educational and workplace experience, is  the negation or lack of understanding given to their sensory and social needs.

A pivotal aspect of this is that, regardless of how highly advanced the skill sets of adults with HFA may be, or how pertinent their qualifications are to their positions within the workforce, their sensory issues and social difficulties are still being viewed negatively.

Often these sensory difficulties are interpreted as a failure to meet the needs of the workforce environment by both employers and workforce agencies alike.

“Despite my son’s TAFE qualifications, it is almost impossible for my son to compete for a position in the open workforce. The main reasons are probably his communication problem and not being able to work under pressure.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

One adult with High Functioning Autism described his experience in this way:

“I have found the current emplacement services to be poor. I tire of dealing with a world that places more emphasis on sociability and likeability than on actual skill. I tire of seeing idiots that are less capable than me get positions, just because they can play the social/political games”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

This negation of personal skills due to sociability issues can lead to a harmful sense of alienation for individuals with HFA due to the internalisation of the many negative and damaging comments which erode their levels of self-esteem, within the context of the workforce.

“I’m 45, worked full-time for 29 years, but have not worked at all this year. Two positions I’ve had I held for 10 years each, but in every job I’ve been a complete social failure. I’m reluctant to get another job, and experience another social failing.”                                                                                                                                                                                                                                                                                                                                                                 

Such statements support the urgent need for understandings regarding the importance of finding the right form of employment, both in terms of qualifications, skills, interests and individual sensory and social supports, to be taken into account.

Levels of support currently experienced within the workplace.

Further evidence of the need for appropriate sensory considerations and support can be found in the expressions of those adults with HFA currently within the workforce.

Of the 34 adults who responded to the question:

What types of support are being received at work?

Only 5 indicated receiving support from specialised workplace agencies.

The majority of respondents indicated that their employers were aware of their conditions yet less than half reported receiving specific considerations from their employers.

Of those who did report receiving special considerations those considerations were expressed in this way;

“My employers are flexible with what I can handle, e.g. they don’t put me on customer service or phone work”.

“My boss provides specific instructions for me for my tasks, as well as informing others”.

“I receive instructions in both written and diagram form”.

The levels of support that employers provide in these instances can be seen as minimal.

Only one participant indicated receiving consideration of sensory issues other than social contact through “special lighting for sensory issues”.

When responding to the question as to what types of support would be desired at work, the majority of respondents stated the need for greater understanding, recognition, respect and awareness of their HFA needs within the work place from others. 

A further subset within this group consistently noted the need for greater social skills and communication support as well as the desire to access workplace counselling.

The Illusion of Coping

This survey further found that there were a subset of adults with HFA who express showing an awareness that they appear to be coping with the social aspects of educational or workforce environments but that they are indeed still experiencing difficulties with sensory issues.

These participants describe that, even though they mask their difficulties because of their awareness of the behaviours that are expected of them, they are still experiencing significant social and sensory stress.

“For me, learning how to be social doesn’t make it easier or less stressful because it’s still against my natural grain. If I behave in a socially normal way, then that’s how people perceive me, and I have to keep up that standard which is impossible. I know how to act normal, but I don’t want to have to.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

In this expression the demand placed on those with HFA within work place environments which are not sensitive or responsive to their needs, creates a sense of personal onus on the individual with HFA, to behave in ways that are socially acceptable yet uncomfortable for them.

This is reflected in the following statement in which the illusion or “façade” of successful participation in the workplace is described not as success but as forming the basis for the hope to be able to leave the workforce all together.

“I hope to be able to keep up the facade till the house is paid off so I can revert to total privacy and start to catalogue and read the thousands of books I have.”

Within this study there are several clear expressions by adults with HFA which indicates both their high levels of self-awareness and an acknowledgement of the need to reduce social and sensory interactions by having more control over their work environments in order to create a healthy and sustainable work situation.

“My goal is to have the qualifications that will allow me to have much more choice over type and situation of employment so that I can work in my field but in an environment and under conditions that are conducive to a more balanced lifestyle, mental and physical health and the chance to have my skills acknowledged.  At the moment I work in a retail setting…and it’s having a heavy toll.”

Adults with HFA are beginning to acknowledge, define and give voice to the multiple sensory and personal difficulties they encounter within the workforce.

Their voices are expressing that although the perceived ideals of success for adults with HFA in the work force have predominantly been based on the ideal of full-time employment, or the level of income achieved, there are also other determining factors which contribute to workforce success for adults with HFA, which are far more complex and require greater recognition.

Central to these issues are the needs for those with HFA to be able to:

Successfully engage in areas of personal interest both within education and employment.

To have their skills and qualifications appropriately utilized and recognised.

And to have their sensory and social requirements understood by employers and taken more clearly into account within daily workforce practice.

 Conclusion

Overall the experiences of adults within this survey suggests that there is a significant disconnect occurring between the policies designed to create educational and employment equality for adults with HFA and the lived experiences of those with HFA.

This disconnect between policy and practice that can be viewed as operating within 3 key areas of experience.

Lack of appropriate educational opportunities and support.

Lack of support within employment agencies and lack of opportunities within the field of employment.

The need to recognize that the current negation of the skills of adults with HFA are being further compounded by a lack of understanding and accommodation of their sensory needs within the workforce.

These 3 areas of distinction lead both parents of young adults with HFA and adults themselves, to question and contest the validity and success of policies that preference under resourced, unsupported, misunderstood and unfulfilling workforce participation for adults with HFA, above honouring and acknowledging their needs for self-esteem, recognition of qualifications and sensory and social supports.

A key way of addressing these issues would be for government initiatives to follow the suggestions of adults and parents who consistently argue for the need to create both education and employment programs that build on and harness the individual skill sets of those with HFA whilst acknowledging their sensory and social needs instead of continuing on with generic or blanket approaches which create frustration and a sense of harm for adults with HFA.

The benefits of taking an individually tailored approach toward education and employment may create the potential to both activate and validate the diverse skill sets adults with HFA currently demonstrate through their participation within voluntary organisations.

In this way workforce policies may be able to offer a new way of perceiving and understanding the interests, skills and potential of those with HFA in a manner that increases self-esteem through recognising both the qualifications and needs of adults with HFA.

Such measures would enable adults with HFA to successfully and safely translate their skills into equally sustainable and fulfilling workforce participation.

Research analysis compiled, conducted and written by Seventhvoice.

 

Research Findings Reveal the Lack of Support Currently Being Given to Young Adults with High Functioning Autism within higher education and the workforce.

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Given that educational achievements have traditionally set the benchmarks for employability, the lack of assistance and support given to young adults with high functioning autism, particularly within the later stages of schooling, forms an area of growing concern.

Research findings indicate that previously established support systems either disappear or are significantly absent during those key periods when young adults with HFA are transitioning from high school to College, TAFE or out into the broader work force

Parents state that toward the final years of their young adult’s education they experience having to seek out other resources and support systems on their teenager’s behalf due to the lack of services made available to them within higher educational environments.

“When my son reached Year 11 Level, the college which my son attended said they no longer had a curriculum (modified) available to him”.

“When my son was in Year 11, we were told by the principal and other teachers that they could do no more for him and that he was actually a distraction to the other children in his class and were holding them back from reaching their full potential. We were told that he would not gain anything by coming back to school the following year! “

Statements such as these indicate the existence of the fundamental gap in equality experienced  by young adults with high functioning autism within the current educational system.

Given that a key premise upon which governmental policy is currently based, relies on the ideal that equal educational opportunities for those with disabilities, equates to the prospect of equal employment opportunities (Oliver, 1983, 1996) evidence of this gap is worrying.

The existence of this gap in equality is further reflected in the lived experiences  of adults with HFA, who indicate that the ideals of  equal educational outcomes, do not match the realities of trying to attain equal opportunities both pre and post education.

At the end of their young adults education, parents expressed that their loved ones were being ‘shut out; of  further educational opportunities and instead being exposed to a lack of resources within the broader community.

“As soon as he turned ’16’ – they just wanted him to leave. There was no guidance or support to transition him to TAFE. I had to do all the research on my own. When he finished at TAFE there was no support what so ever for career planning + engaging work. It was a very frustrating process. “

 

Parental expressions of frustration at the lack of appropriately formed educational spaces for young adults with HFA were further exacerbated by the lack of interest shown by workforce agencies in seeking to engage young adults with HFA within their specific areas of interest or talent.

“After leaving school he has, as a last resort, placed in a facility for severely mentally challenged people, where he had no direction and usually washed staff cars or windows, My son is a talented artist and musician but the talents were never explored by any professionals. “    

Parents whose young adults were not employed reported  that the systemic negation of their sons/daughters particular interests, needs and traits both perpetuates and reinforces the wider problems that young adults with HFA face within the workforce.

“There are just NO OPTIONS for individuals with complex needs/ASD.   It is extremely frustrating that even in this environment with the profile of autism that the only comment in a supported employment IEP was “you need to improve your eye contact”.    School was tough but since leaving school trying to cope and source options is mission impossible.  I would urge, no make that plead Aspect ,to work with providers to source options for these young people.”

“No proper understanding of his disability by government, the employment support agencies and potential employers. He can’t do interviews. “                                                            

“Lack of true understanding from agencies of her ‘quirks’ make finding /keeping a job impossible”                                                                                                      

 

Parents describe this sense of negation as further manifesting in the severe  lack of understanding and support given to attaining employment opportunities which reflect the interests, qualifications, talents and needs of young adults with HFA as a whole.

“My son has to do jobs that are boring to him. He gets fired regularly because of his lack of understanding or that of his employer. He would rather be doing something graphical. “

Parental responses also indicate that there may be a considerable amount of disparity  occurring between the definitions of success applied by workforce agencies and those applied by young adults and parents.

“He has a Diploma in library and Information Services which he only partly uses in his job at UWS. The employment provider found him the job at Woolies 5 years ago and has made no moves to change him to anything more challenging and has now ‘left’ him as he is so ‘successful’  “

This sense of disparity is further expressed by parents whose young adults are currently engaged with the work force in diverse areas of employment ranging from full, part-time and casual positions in sheltered work shops, supermarkets, office work, computing, IT and electrical work through to those running their own businesses.

Within this section parents note two key themes. 

Firstly, that although their son/daughter may be working, often that work is acquired through a long process which neither necessarily addresses nor validates the qualifications they hold in their already established fields of interest, talent or expertise.

“It took 20 months for my son to find a job. He spent 6 years at university and has been working for 18 months in Woolies/Bunnings stacking shelves” .

“My son is not working in the area in which he gained his University qualifications but is using some of his writing and computing skills.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Secondly, that whilst adults with HFA may hold and maintain higher degrees, skills or qualifications than those required to perform their current jobs, they are still experiencing an overall lack of responsiveness or understanding from both those working within employment agencies and employers, who refuse to appropriately acknowledge their qualifications within workforce positions.

“His qualifications are in Library and Information Science but librarians were un-supportive generally of his special though not particularly difficult to accommodate special needs.” 

Parental expressions further indicate that the area of  volunteer work  currently offers one of the few areas in which adults with HFA are being given a way to show case, build on and explore their skills. 

“He has only once been given an opportunity to use his computer skills in voluntary work that ended after eighteen months.”

The desire to activate their skills and participate in areas of interest within voluntary work is reflected in the experiences of adults with HFA within this survey who report taking part in a diverse range of positions including volunteer fire fighter, zoo keeper, computing and IT work and assisting those with disabilities.

For many, volunteer work provides a way to both  access and increase their already existing skill sets, whilst demonstrating their capacity to effectively work within their fields of interest.

This significantly indicates that adults with HFA are willing and able to step into those roles which meet their skills, qualifications and interest levels.

 Yet despite being able to demonstrate holding the appropriate skill sets and capacity to work this survey has indicated that  adults with HFA are still facing significant hurdles when seeking paid employment.

Those hurdles centre around the lack of understanding in regards to the needs or “quirks” of individuals with HFA and  are reflective of the overall lack of awareness  described as existing by parents and young adults themselves, within supported workforce programs, employment agencies, employer attitudes and the broader community.

All research  analysis  conducted and written by seventhvoice as derived from  2011 nation wide survey.

 

The Importance of Identifying Asperger’s Syndrome / High Functioning Autism in Adults

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“Growing up with undiagnosed Asperger’s Syndrome can be traumatic for many individuals.”

Many adults with undiagnosed Asperger’s Syndrome are usually keenly aware that they do not ‘fit in’, yet are unable to either express or understand exactly what it is that makes them feel differently to others.

For this reason many undiagnosed adults develop negative perceptions of themselves as “weird”, “crazy,” or “broken.”

Despite these negative self-images, many undiagnosed adults are able to hide their difficulties by developing coping mechanisms, such as mirroring or mimicking those around them in social settings.

They are therefore seen as being able to engage in the everyday routines of life such as working, having relationships, getting married and having children.

Yet though they have the ability to apply such coping mechanisms, many individuals with undiagnosed AS, are never able to shake off the underlying awareness of themselves as inherently ‘different’ to those around them.

Ironically, the very skill sets that adults with undiagnosed moderate to mild Asperger’s apply, in order to try and ‘fit in,’ have meant that they have flown “under the diagnostic radar”.

Other individuals with undiagnosed AS, who have not learnt such skill sets, may show greater signs of having social communication difficulties.

This can make them more susceptible to situations such as chronic unemployment and social isolation due to the fact that they may be mistakenly perceived as people who are deliberately anti-social, argumentative, objectionable or aloof loners who crave only their own company.

In reality, these people may be individuals who are displaying the lack of social skills required to communicate and act appropriately, that make up the characteristics or traits commonly described in Asperger’s Syndrome.

It is now well established that individual with AS may display varying degrees of some or all of the following characteristics:

A lack of social skills which manifest in inappropriate social approaches, responses or social awkwardness.

Difficulty recognizing the facial expressions or emotions of others.

Difficulties in considering or understanding others’ viewpoints.

Limited interest in friendships


Difficulties with being able to communicate their ideas, thoughts and emotions.

Difficulties in comprehending and following social reasoning and adhering to the status quo.

Difficulty with transitions and changes.

Hold a strong need for routines.

Narrow range of interests or idiosyncratic special interests.

Be overly sensitive to sounds, tastes, smells and sights.

Have motor coordination difficulties.

Experience difficulty managing their own negative feelings, especially anxiety, anger and depression

Adults with undiagnosed AS are susceptible to experiencing high degrees of stress, frustration, confusion and anxiety due to their awareness that they do not ]fit in’.

These additional difficulties have often been misinterpreted, misdiagnosed, misunderstood and mistreated, especially when their underlying AS is undiagnosed or not adequately understood.

Some of the most common additional difficulties include:

Angry outbursts (physical or verbal aggression, verbally threatening behavior)

Agitation and restlessness

Increase in obsessive or repetitive activities, thoughts, or speech

Low mood or depression

Apathy and inactivity

Unfortunately many professionals who are unfamiliar with AS often only focus on the surface symptoms and behaviors that an individual with undiagnosed AS may display.

This leaves individuals with undiagnosed AS at risk of being incorrectly diagnosed with conditions such as:

Personality Disorders

Psychosis

Bipolar Disorder

Obsessive Compulsive Disorder

Mood disorder

It is therefore essential, that in order to prevent individuals with undiagnosed Asperger’s Syndrome from being incorrectly diagnosed with conditions, treatment plans and medications that will not help them, that a thorough Autism assessment must be applied to adults who fall within this criteria.

A proper diagnosis of AS can better help adults put their difficulties into perspective and enable them to understand the underlying reasons for their lifelong struggles.

Correct diagnosis and effective treatment can help improve self-esteem, work performance and skills, educational attainment and social competencies.

More importantly a correct diagnosis can trigger both a journey of self-discovery and a healing process for the individuals concerned. 

 

Falling Into the Words of Others……. The Benefits of Reading Blogs

Black pearl and its shell

Sometime people ask me why I bother with blogging. After all they reason, “Isn’t caring for your son a full-time job in and of itself?  What with all the battles you go through just trying to get your son’s rights to have his abilities recognized and taken seriously by others, why on earth do you want to write about Autism? How do you even have the energy  to  write about anything?”

I must admit that some days, when the fights been particularly long and hard, and the shawl of defeat hangs itself across my shoulders like some desperately unwanted shroud that marks me out as a person who feels as shatteringly misunderstood and out-of-place in this world as the missing puzzle piece that has ironically become the universal symbol for Autism, I wonder why I bother blogging too.

But then I read the words of others and they enrich me in ways that help me pull myself back together and enable me to once again  begin to view life from a broader perspective.

A perspective that helps me replace my temporary and insular micro filter  of defeat  and instead enables me to attach a wider lens that lets me know that I am indeed part of a greater whole.

A lens that is in fact so wide that it incorporates all of the issues that are facing so many different people from more walks of life than there are colors in the rainbow.

Reading the words of others reminds me that life is like a pearl.

An organic composition that builds upon itself,

Layer by layer,

Feeding on past irritations,

Forming silently within the enclosed darkness,

That cements it into place.

And that it is only when the shell is opened up and those layers of irritation are revealed, that the pearl itself becomes transformed by the eyes of others, into a thing of beauty.

Blogging I think works in the same way. So regardless of whether or not the opening up of our shells brings either tears or joy, the mere act of making the effort to reveal ourselves, our lives and our stories, to the world, is an  achievement all in itself.

For some I know the process of blogging, of paring oneself back to bare bones to see who and what they are, of bring their true selves to the surface, is a painful one. For others it can be cathartic, light-hearted or even whimsical, but always, always without fail, regardless of what the topic may be or how it is presented, there are always pearls of wisdom to be found within the words of others.

Sometimes, I admit, I don’t find the pares straight away.

Sometimes it takes an event occurring within my own life to shake me and wake up to the memory of reading another’s words about a similar situation before I can understand the points I’d missed.

It is in these moments of missed recognition that I will go back and search through Word Press until I find the post I’m looking for. Often along the way I will find many, many more posts dealing with the same issues that I had previously and erroneously thought were not mine to deal with.

The more posts I read, the more pearls of wisdom I gather and the greater my own levels of awareness, understanding and compassion grows.

Some of your posts make me cry. Some make me smile. Others make my head nod up and down while reading along with the unspoken acknowledgment of a shared truth. Still others make me shake my head in exasperation.

Yet I have learned that regardless of whether or not I agree or disagree with a post, or whether it makes me laugh or cry, there is always some element of experience or knowledge that takes me out of myself, out of my life with Autism and expands my world view.

You make me aware that although all of our personal truths may indeed be different, they are all indeed truths and should be respected as such.

So I bear in mind, as I am reading your posts, that some of you may be speaking of truths that I have yet to learn and some of you may be speaking of personal truths that may never be my own. Just as my personal truths may never be yours to experience in real-time.

Yet regardless I appreciate the privilege of seeing so many different people, each living different lives, in so many different cities, with as many different faces,  telling their silent truths with words all across the globe.

Indeed this world that we all inhabit, our globe, is shaped like a pearl.

This is what makes me think now that wisdom can be found not only by looking deeply into the parts of us that hurt us the most, but  in the very act of opening up our shells and letting ourselves be exposed to the light cast by the minds of others.

For sometimes, it is only when being viewed through the words of others, that our own personal truths, our own pearls of wisdom, become finally apparent, even to ourselves.

This is why I love reading and falling into the words of others.

So thank you to each and every blogger whose words have allowed me to gain a new perspective and glimpse those pearls earned from your own hard-won wisdom.

 

High Functioning Autism in Females – Addressing the level of misdiagnosis reported by parents of daughters with Asperger’s Syndrome – High Functioning Autism

Splashes approximating big

Figures derived from a national survey on the experiences of parents with young adults on the Autism Spectrum conducted in Australia last year indicate that out of the 203 parents who responded to the survey only 44 reported having daughters diagnosed as being on the Autism Spectrum.

30 of who were diagnosed specifically with having Asperger’s Disorder / Asperger’s Syndrome.

This stands in stark contrast to the 152 parents who reported having sons diagnosed on the Spectrum.

For this reason the information provided by parents with daughters on the Autism Spectrum is considered to offer a previously unexamined snap shot of the previously unrecognized  parental experiences that are  unique to parents of daughters on the Autism Spectrum.

Mothers of daughters within this survey reported that they had to struggle with professionals who were either unaware, ill-equipped or in some instances entirely unprepared to diagnose girls with High Functioning Autism/ Asperger’s Syndrome, Asperger’s Disorder.

As a result many mothers, such as a mother whose daughter wasn’t diagnosed with Asperger’s Disorder until the age of 44, reported having their children regularly misdiagnosed over the course of several years due to inappropriate professional biases towards them as mother’s and a clear lack of understanding as how Autism presents within girls.

The rates of diagnosis and age at diagnosis for girls with Asperger’s Disorder/ Asperger’s Syndrome or High Functioning Autism are further reflected in the statistical data.

Parent Gender

Year of Birth Diagnosis Age at Diagnosis
Mother 1989 Asperger’s Disorder 12
Father 1981 Asperger’s Disorder 26
Father 1986 Asperger’s Disorder 12
Mother 1991 Asperger’s Disorder 19
Mother 1986 Asperger’s Disorder 14
Mother 1988 Asperger’s Disorder 12
Mother 1984 Asperger’s Disorder 13
Mother 1975 Asperger’s Disorder 20
Mother 1995 Asperger’s Disorder 7
Mother 1991 Asperger’s Disorder 13
Mother 1992 Asperger’s Disorder 15
Mother 1988 Asperger’s Disorder 20
Mother 1964 Asperger’s Disorder 44
Mother 1992 Asperger’s Disorder 16
Mother No Record Asperger’s Disorder 26
Mother 1978 Asperger’s Disorder 20

Mother

No Record Asperger’s Disorder 7
Mother 1985 Asperger’s Disorder 10
Mother 1975 Asperger’s Disorder 26
Mother 1998 Asperger’s Disorder 12
Mother 1983 Asperger’s Disorder 18
Mother 1972 Asperger’s Disorder 26
Mother 1989 Asperger’s Disorder 12
Mother 1992 Asperger’s Disorder 18
Mother 1989 Asperger’s Disorder 13
Mother 1986 Asperger’s Disorder 9
Mother 1992 Asperger’s Disorder 14
Mother 1984 Asperger’s Disorder 9
Mother No Record Asperger’s Disorder 7
Mother 1987 Asperger’s Disorder 15

The youngest age at which girls identified as having an Asperger’s Disorder were reported being diagnosed within this survey was that of 7 years, at which only 3 girls, were identified.

2 girls were reported as receiving their diagnosis between the age of 9 and 10 years.

8 girls with Asperger’s Disorder were reported as receiving their diagnosis between the ages of 12 and 13 years.

11 girls were reported as receiving their diagnosis between the ages of 14 and 20 years.

7 females were recorded as receiving their diagnosis after the age of 21.

This indicates that the most likely age range for girls with an Asperger’s Disorder or Asperger’s Syndrome to be diagnosed is between that of 14 and 20 years.

The oldest reported age of diagnosis for a female with Asperger’s Disorder by a mother within this survey is recorded as being at 44 years.

Her mother reports that her daughter’s diagnosis process was “slow” and “frustrating” and states that:

“We eventually found a practitioner who knew about autism but it took decades to find someone.”  In the meantime this mother reports being filled with:  “FRUSTRATION and crying out for real help.”

This expressed sense of frustration is echoed time and time again by mothers with daughters on the spectrum and further indicates that there may well be several issues of gender at play within the realms of diagnosis.

Comments from mother’s within this survey indicate that not only does the gender of the child/young adult being assessed for  an Autism Spectrum Disorder play a major role in the levels of diagnosis occurring but also the gender of the parent engaging within that diagnostic process.

This is further highlighted by the fact that although mothers of children within this study reported having an initial understanding that their children (both male and female) had different ways of responding to the world, often their attempts to understand those differences resulted in negative and personally harmful parental experiences with doctors.

Several mothers described having their concerns “invalidated” through having their parenting and psychological capacities questioned.

These are the words used by mother’s themselves to describe their experiences with the diagnostic process;

“I was actively invalidated in my concerns”.

No one would listen and called me neurotic”.

“No help at any stage – considerable negativity + Put downs (of me)”.

Mother of daughter with Asperger’s not diagnosed until late teens.

“As a mother, I still carry all the emotional scars of the assault on my parenting.”

“Pediatrician refused to diagnose her as he felt she was not on the spectrum.”  

“I knew she had something all along but I couldn’t get a doctor to help.”

Mother of a daughter with Asperger’s not diagnosed until 12.

“Professionals did not have training to recognise ASD in intelligent person”.

Mother of daughter with Asperger’s Disorder.

 “Diagnosis from 7 years old was ADD inattentive, anxiety, transient tic, depression.”

Mother of daughter with Asperger’s not diagnosed until the age of 18.

“Took from age 2 to 11 years to receive diagnosis.”  

“No one was prepared to help from when K was young (neurotic mother) “.

“5 years of medical mis-advise misdiagnosis, misunderstanding, full of angst.”

“Many incorrect diagnosis/parental blame/lack of support”.

“We had idea about ASD, diagnosed with ADD at 4 years.”

Mother of young adult not diagnosed until 22 yrs.

“Long process, complicated (by system/practitioners)”.

However, only one father within this study reported having any such experiences.

Mothers therefore describe having to engage with a lack of understanding and support that often began with their initial attempts to have their child’s needs recognised through a medical diagnosis.

Such parental experiences indicate that the tendency of medical professionals to ignore or misplace parental concerns, particularly the concerns of mothers, as reported by Phillip and Duckworth (1980) and explored in the works of Green (2005) and Ryan and Runswick-Cole (2007) are still occurring.

As Green (2005) and Ryan and Runswick-Cole (2007) argue, the medical mis-recognition of maternal concerns emphasises their precarious and powerless position which arises as a consequence of the unequal balance of power that is created through the elevation of medical opinion above the legitimate recognition of parental expertise.

Parents indicate that as a consequence of not having their concerns legitimately recognized or understood, their children’s needs were also negated. This is further reflected within the trends found within data derived from females on the autism spectrum.

Significance of female data

The significance of a lack of diagnosis occurring for girls with Asperger’s Disorder before the age of 7  and with the majority of diagnosis taking place between the ages of 14 -20 years for females, signals the possibility that medical professional may still yet remain either unwilling or unable to sufficiently detect the signs of Asperger’s Disorders / Asperger’s Syndrome in girls.

Maternal experiences of misdiagnosis, invalidation and their overall lack of recognition within the diagnostic process within this study suggests the need for medical practitioners to incorporate greater acceptance of parental insights. Regardless of gender.

As such the statistical findings relating to the lack of diagnosis for girls with Asperger’s Disorder prior to the age of 7 and the predominance of diagnosis between the ages of 14 – 20 years, supports the assertions voiced  by both many adult women with AS (Simone, Lawson,) and parents within this survey, that there is a strong need for those within the medical profession to redress their gender bias  within all areas of diagnosis in order to increase their diagnostic capabilities so that they can more accurately diagnose and assess the needs of females on the Autism Spectrum as a matter of urgency.

 

Autism – the ‘Lost Generations’

Artwork by Maria Zeldis

Artwork by Maria Zeldis

Our  societies system of assessing and coordinating services and supports to families and young adults with disabilities has been developed on the basis of a significantly misinformed analysis of what certain types of disabilities actually are and how they occur.

In short this system is fundamentally flawed at its very core. This in turn has caused the denial of services to those with  misunderstood conditions such as Autism and Asperger’s Syndrome, particularly for women and girls.  But it’s not all rosy for boys either, many of whom still miss out on receiving vital medical, educational, financial and workplace supports due to the fundamental errors this system makes in defining and deciding the level of  functional severity required to qualify for support.

As a society we like to think that greater levels of recognition will create greater levels of support and understanding but  in the meantime… we are now facing the largest en mass wave of young adults with Autism and Asperger’s ever to enter into our communities and those young adults need support services now.

It’s not good enough to say that we either don’t qualify for, or have to wait years for support. We need support services now otherwise we as a society will have to own up to knowingly  creating  “Autism’s Abandoned Generations”….

Those whose differences are noted  by professionals yet not considered severe enough, by more professionals,  to warrant  the support that many parents and young adults  with Autism themselves declare that they need.  As parents many of us of have been shouting from every corner of the globe trying to raise awareness of  the ways in which our children and young adults have been made to suffer the ignorance’s  and intolerance’s of a system gone so completely wrong.

We encourage our young adults to speak for themselves and many of them now are, and have been, for quite some time….

The problem is… they are not being listened too any more than we  as parents were listened too when we first spoke up and out for our children.  Politicians and medical professionals continue to ignore the immense and continuously growing body of literature on Autism and Asperger’s written by adults and parents.  It seems that the experiences and understandings of adults with Autism and the parents who deal with the needs of autistic children on a daily basis and who are more often than not well-informed and well-educated, are still not being heard.

The only time professionals seem capable of changing their opinions is after the personal experience of having a family member diagnosed with Autism and even then, for now at least, those brave enough to admit to it, remain either in the minority or are ostracized.  So what will it take to amend this problem and why is there such a horrendous  level of resistance toward acknowledging the diagnostic mistakes of the past (Refrigerator Mothers & other Autism Myths)? Do any of us really believe that  reframing the method or manner of diagnosis within the new DSMV will do anything to address this?  I for one think that it’s time that our young adults and their parents heard the words “Sorry… We got it wrong……What can we do to help”…..  Wouldn’t that be nice?

(P.S.  Yes I know… globes don’t technically have corners!)

 

Is Autism a Disability or a Difference ? BY Judy Endow

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“So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

“Is autism a disability or a difference?”is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer.

When Autism is a “Difference”

Many autistic adults would like if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large.

Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

It seems to me that when we are able to be out and about in our communities unassisted by a hired person we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us.

When Autism is a “Disability”

For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs – we understand the disability aspect of our autism.

We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait.

But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills and talents as the time and energy of others are focused on the meeting deficits and needs imposed by our disability.

Negative Outcome of Choosing Disability OR Difference

As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose “disability” it means my talents, strengths, abilities and preferences are ignored. When I choose “difference” my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative “character flaws.”

Might We Incorporate Both Disability AND Difference?

What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again – another dichotomous choice posed as if it were a real choice!

In the meantime, please know when you ponder whether autism is a disability or difference this is a false choice sort of deal. It serves nobody well and has poor outcomes. And yet we somehow feel that we need to choose between disability or difference.

Why is that?”

Written by Judy Endow.

See more at: http://ollibean.com/2014/06/20/autism-disability-difference/#sthash.NMT4ZQZ4.dpuf

Related posts: http://seventhvoice.wordpress.com/2013/10/11/autism-different-not-less-the-importance-of-belief-3/

http://seventhvoice.wordpress.com/2013/12/04/adapting-peggy-mcintoshs-paper-on-unpacking-the-invisible-knapsack-of-privilege-to-accommodate-and-reveal-how-neuro-typicality-constructs-its-own-unspoken-system-of-privileg/

http://seventhvoice.wordpress.com/2013/11/22/women-and-autism-how-one-womans-letter-to-a-psychologist-finally-helped-her-receive-an-asd-diagnosis-after-years-of-personal-invalidation/

http://seventhvoice.wordpress.com/2013/11/10/autism-form-an-adults-perspective-its-a-horrible-feeling-of-vulnerability-and-helplessness-to-know-that-the-non-autistic-world-sees-you-as-seriously-impaired/

http://seventhvoice.wordpress.com/2013/11/09/rising-to-meet-the-challenges-of-understanding-ourselves-as-autistics-in-a-non-autistic-world/

Chalk Word Lines of Separation by Judy Endow

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“Sneaky words, said with a smile,
While holding a piece of chalk,
To draw the dividing line,
Made by words,
Sounding alright on the surface,
But laden with,
Otherness.
Less Than
Different
Not US
And sometimes Not Quite Human

We are the people you call

  • Special
  • Low Functioning
  • High Functioning

You say we are in need of a

  • Peer Buddy
  • Peer Pal
  • Good Friend from Mrs. Jones Program

We are the

  • Inclusion Student
  • The community service hours other kids need

We sit

  • At the Peer Buddies lunch table
  • The Special Ed table in the Inclusion Room
  • On the Special Ed bench waiting for our short bus

During the school day you will find us in the

  • Inclusion Room (when it is our turn because they can only take one of us at a time)
  • Cognitively Delayed Room
  • Behavior Room
  • Emotionally Disturbed Room
  • EBD Room (Emotionally Behaviorally Disturbed)
  • Special Ed Room
  • Special Needs Room

We are so doggone “special” that after school we attend

  • Special Olympics
  • Special Arts
  • Special Night at the YMCA
  • Special Needs Social Group

Where every participant is just as special
And those who are not special are our helpers

 When we grow up we live in

  • Special Housing
  • Some of us in Section 8 rentals
  • Some in group homes
  • Some in county care facilities
  • Some of us are so special that there isn’t even a special enough place for us so we stay living with our parents.
  • Some of us are not quite special enough to get on a housing list and yet cannot maintain on our own so we stay living with our parents.

As adults too many of us spend our days

  • In Special Programs (if our county has them)
  • At ARC (if our town has an ARC)
  • At Sheltered Workshops (if one is available)
  • In Supported Employment (if we qualify)
  • Looking for a job (on the days we are able to)
  • On the couch in our parent’s home (because other options are not available)

Because we are so deficient
In ever so many ways
Whenever we do something ordinary
like zip up our jacket, ride a horse, or answer Jeopardy questions you describe us as

  • Awesome
  • An Inspiration

I don’t understand this. If my friends and I are such awesome inspirations to the rest of you

  • Why is it that we are in two distinct groups – US and THEM?
  • Why is it that your group always holds the chalk?
  • Why do you keep using your chalk to draw lines that divide us?
  • Why do you want me on the other side of your line – away from you?
  • And why do you think this is good?”

By Judy Endow

This is just an abstract from her amazing poem, “Chalk word lines of separation”, I encourage you to read it in its entirety on her blog site at http://www.judyendow.com/advocacy/chalk-word-lines-of-separation/

Is the CDC guilty of a cover up? You decide.

Methodological Issues and Evidence of Malfeasance in Research Purporting to Show Thimerosal in Vaccines Is Safe
Brian Hooker,1 Janet Kern,2,3 David Geier,2 Boyd Haley,4 Lisa Sykes,5 Paul King,5 and Mark Geier2

1Simpson University, 2211 College View Drive, Redding, CA 96001, USA
2Institute of Chronic Illness, Inc., 14 Redgate Court, Silver Spring, MD 20905, USA
3University of Texas Southwestern Medical Center at Dallas, Dallas, TX 75235, USA
4University of Kentucky, Lexington, KY 40506, USA
5CoMeD, Inc., Silver Spring, MD, USA

Received 15 February 2014; Accepted 12 May 2014; Published 4 June 2014

Academic Editor: Jyutika Mehta

Abstract

“There are over 165 studies that have focused on Thimerosal, an organic-mercury (Hg) based compound, used as a preservative in many childhood vaccines, and found it to be harmful. Of these, 16 were conducted to specifically examine the effects of Thimerosal on human infants or children with reported outcomes of death; acrodynia; poisoning; allergic reaction; malformations; auto-immune reaction; Well’s syndrome; developmental delay; and neurodevelopmental disorders, including tics, speech delay, language delay, attention deficit disorder, and autism. In contrast, the United States Centers for Disease Control and Prevention states that Thimerosal is safe and there is “no relationship between [T]himerosal[-]containing vaccines and autism rates in children.” This is puzzling because, in a study conducted directly by CDC epidemiologists, a 7.6-fold increased risk of autism from exposure to Thimerosal during infancy was found. The CDC’s current stance that Thimerosal is safe and that there is no relationship between Thimerosal and autism is based on six specific published epidemiological studies coauthored and sponsored by the CDC. The purpose of this review is to examine these six publications and analyze possible reasons why their published outcomes are so different from the results of investigations by multiple independent research groups over the past 75+ years.
1. Introduction

Thimerosal is an organic-mercury (Hg) based compound, used as a preservative in many childhood vaccines, in the past and present. To date, there have been over 165 studies that focused on Thimerosal and found it to be harmful [1, 2]. (A comprehensive list of these studies is shown at http://mercury-freedrugs.org/docs/20140329_Kern_JK_ExcelFile_TM_sHarm_ReferenceList_v33.xlsx.) Of these studies, 16 were conducted to specifically examine the effects of Thimerosal on human infants and/or children [3–18]. Within these studies, which focused on human infants and/or children, the reported outcomes following Thimerosal exposure were (1) death [3]; (2) acrodynia [4]; (3) poisoning [5]; (4) allergic reaction [6]; (5) malformations [7]; (6) autoimmune reaction [8]; (7) Well’s syndrome [9]; (8) developmental delay [10–13]; and (9) neurodevelopmental disorders, including tics, speech delay, language delay, attention deficit disorder, and autism [10, 11, 14–18].

However, the United States (US) Centers for Disease Control and Prevention (CDC) still insists that there is “no relationship between [T]himerosal[-]containing vaccines and autism rates in children” [19]. This is a puzzling conclusion because, in a study conducted directly by the CDC, epidemiologists assessed the risk for neurologic and renal impairment associated with past exposure to Thimerosal-containing vaccine (TCV) using automated data from the Vaccine Safety Datalink (VSD) and found a 7.6-fold increased risk of autism from exposure to Thimerosal during infancy [20]. The database for that study was “from four health maintenance organizations [HMOs] in Washington, Oregon, and California, containing immunization, medical visit, and demographic data on over 400,000 infants born between 1991 and 1997.” In that initial study, Verstraeten et al. [20] “categorized the cumulative ethyl-Hg exposure from [T]himerosal[-]containing vaccines after one month of life and assessed the subsequent risk of degenerative and developmental neurologic disorders and renal disorders before the age of six.” They “applied proportional hazard models adjusting for HMO, year of birth, and gender, and excluded premature babies.” The reported results showed that “the relative risk (RR) of developing a neurologic development disorder was 1.8 (95% confidence intervals [CI] 1.1–2.8) when comparing the highest exposure group at 1 month of age (cumulative dose > 25 μg) to the unexposed group.” Similarly, they “also found an elevated risk for the following disorders: autism (RR 7.6, 95% CI = 1.8–31.5), nonorganic sleep disorders (RR 5.0, 95% CI = 1.6–15.9), and speech disorders (RR 2.1, 95% CI = 1.1–4.0)” in the highest exposure group.

Considering the many peer-reviewed published research studies that have shown harm from Thimerosal, including studies in which Thimerosal exposure is associated with the subsequent diagnosis of neurodevelopmental disorders (16 studies) such as autism, and the just-described evidence from the CDCs own research, which found evidence of a relationship between the level of Thimerosal exposure and the risk of a subsequent autism diagnosis, how does the CDC conclude that there is no evidence of that relationship? The foundation for the CDC’s current stance apparently is based primarily on six specific published epidemiological studies that the CDC has completed, funded, and/or cosponsored, starting in the late 1990s. These studies include (1) the Madsen et al. [21] ecological study of autism incidence versus Thimerosal exposure in Denmark, (2) the Stehr-Green et al. [22] ecological study of autism incidence versus Thimerosal exposure in Denmark, Sweden, and California, (3) the Hviid et al. [23] study of autism incidence versus Thimerosal exposure in Denmark (also ecological), (4) the Andrews et al. [24] cohort study of autism incidence and Thimerosal exposure in the United Kingdom, (5) the published Verstraeten et al. [25] CDC cohort study of autism incidence and Thimerosal exposure in the United States, and (6) the more recent Price et al. [26] case-control study of autism incidence and Thimerosal exposure in the United States. Although the CDC cites several other publications to purport the safety of Thimerosal, only these six specifically consider its putative relationship to autism.

The purpose of this review is to examine these six publications [21–26] which were “overseen” by the CDC and which claim that prenatal and early childhood vaccine-derived Thimerosal exposures are not related to the risk of a subsequent diagnosis of autism or autism spectrum disorder (ASD). This review analyzes possible reasons why their published outcomes are so different from the results of investigations by multiple independent research groups over the past 75+ years. The review begins with an examination of the Madsen et al. [21] study.
2. The Madsen et al. 2003 Study

The CDC-sponsored Madsen et al. [21] study examined whether discontinuing the use of TCVs in Denmark led to a decrease in the incidence of autism. Data were obtained from the Danish Psychiatric Central Research Register, which contains all psychiatric admissions since 1971 and all outpatient contacts in psychiatric departments in Denmark since 1995. The study authors examined the data from 1971 to 2000 and reported that rate of autism increased with the removal of Thimerosal from vaccines (starting in 1992, the year that Thimerosal-containing early childhood vaccines were phased out).

Although there are several concerns about the methodology used, the most serious concern involves diagnosis. As described in the paper, estimates of total autism cases in Denmark were only based on diagnoses occurring during inpatient visits from 1971 to 1994 and then during both inpatient and outpatient visits from 1995 to the last year of the study in 2000. Thus, the inclusion criteria are greatly expanded two years after the phaseout of Thimerosal from infant vaccines in Denmark, creating an “artificial increase” in autism prevalence. The authors conceded that “the proportion of outpatient to inpatient activities was about 4 to 6 times as many outpatients as inpatients with variations across time and age bands.” However, in an earlier publication by Madsen et al. [27], the same authors had stated regarding this same data, “in our cohort, 93.1% of the children were treated only as outpatients…” Unlike the statement in the Madsen et al. [21] study, the 2002 paper indicates that the ratio between outpatients and inpatients in the 1971–2000 dataset was 13.5 : 1, which would account for an even greater increase in cases diagnosed starting in 1995 (i.e., after the probable completion of the phaseout of TCVs that started in 1992).

In addition, the authors stated that the Danish registry which was used to count cases did not include a large Copenhagen clinic before 1993. This clinic accounted for as many as 20% of the autism cases nationwide, which would again artificially inflate the autism incidence observed in Denmark after the phaseout of TCVs was initiated in 1992. The authors do not mention this change in inclusion criteria (i.e., the addition of a new clinic in the registry) neither do they attempt to adjust their analysis in accordance with the anomaly. It was revealed, instead, in a similar paper by Stehr-Green et al. [22] where the authors state regarding the Denmark registry of autistic patients, “Prior to 1992, the data in the national register did not include cases diagnosed in one large clinic in Copenhagen (which accounts for approximately 20% of cases occurring nationwide).”

Also, the diagnosis criteria for “autism” changed within the course of the study. From 1971 to 1993, the ICD-8 standards for diagnosis (psychosis protoinfantilis 299.00 or psychosis infantilis 299.01) were used to measure autism incidence. However, from 1994 to 2000, the ICD-10 standard (infantile autism, F84.1) was used. Although the authors did not address the impact of the change in diagnostic criteria, this could result in as much as a 25-fold increase in cases as the instantaneous change in autism prevalence in Denmark, due to this change, went from a low of 1.2/10,000 to a high of 30.8/10,000 [28].

Another disconcerting methodological issue was that the 2001 data, which showed a strong downward trend in autism rates in at least two of the three age groups (continuing from 1999 through 2001), was not included in the final publication. This was apparent because when the paper was initially submitted for publication, it included the 2001 data. After the paper was rejected for publication by the Journal of the American Medical Association (JAMA) and the Lancet, it was submitted to the journal Pediatrics again including the 2001 data. As stated by one of the peer-reviewers of the Pediatrics submission, “The drop of incidence shown for the most recent years is perhaps the most dramatic feature of the figure, and is seen in the oldest age group as well as the youngest. The authors do not discuss whether incomplete ascertainment in the youngest children or delay in recording of data in the most recent years might play a role in this decline, or the possibility that this decrease might have come about through elimination of [T]himerosal” (January 23, 2003, communication between Dr. Poul Thorsen, Aarhus University, and Dr. Coleen Boyle, CDC scientist). In response to this criticism, the authors removed the 2001 incidence numbers. The authors’ decision to withhold these data resembles scientific malfeasance, especially when coupled with the previously discussed problematic methods for counting autism cases. If the scientists believed that downward trend between 1999 and 2001 was caused by some phenomenon unrelated to the phaseout of the TCVs, these scientists should have included those data and then explained the trend within the discussion of the data.

If the 2001 data had been included in the final publication, the results would have been consistent with a more recent CDC study [29] where a decreasing trend of autism prevalence in Denmark after the removal of Thimerosal in 1992 was reported. Instead of large increases in autism prevalence after 1992, the recent Danish study revealed that the autism spectrum disorder prevalence in Denmark fell steadily from a high of 1.5% in 1994-95 (when children receiving Thimerosal-free formulations were too young to receive an autism diagnosis and, because of the known offset in diagnosis, most of those being diagnosed had been born 4 to 8 years earlier [from 1985 to 1990]) to a low of 1.0% in 2002–2004 (more than 10 years after the phasein of the use of Thimerosal-free vaccine formulations was started in 1992).
3. The Stehr-Green et al. 2003 Study

The CDC’s Stehr-Green et al. [22] study compared the prevalence/incidence of autism in California, Sweden, and Denmark with average exposures to TCVs. Graph-based ecologic analyses were used to examine population data from the state of California (national immunization coverage surveys and counts of children diagnosed with autism-like disorders seeking special education services in California); Sweden (national inpatient data on autism cases, national vaccination coverage levels, and information on use of all vaccines and vaccine-specific amounts of Thimerosal); and Denmark (national registry of inpatient/outpatient-diagnosed autism cases, national vaccination coverage levels, and information on use of all vaccines and vaccine-specific amounts of Thimerosal).

The study followed and appeared to be conducted in response to California study data [30], which was presented to the Institute of Medicine’s Immunization Safety Review Committee. The California data showed that increased uptake of Thimerosal-containing vaccines in California during the 1990s correlated with a corresponding increase in autism diagnoses. In the Stehr-Green et al. [22] study, the researchers stated that the reliability of the autism prevalence data, citing that the California data included autism spectrum disorder diagnoses such as pervasive development disorder (PDD), could account for the increase. However, in a published response to this paper, Blaxill and Stehr-Green [31] stated that the California prevalence rates were reported based solely on autism cases.

In the Stehr-Green paper, the Sweden autism prevalence data showed an increase in autism rates from 5- 6 cases per 100,000 in 1980–82 to a peak of 9.2 cases per 100,000 in 1993. In Sweden, TCVs were phased out starting in 1987. Denmark’s autism prevalence data was identical to that reported in the Madsen et al. [21] study critiqued previously. For Denmark, the authors reported an astounding 20-fold increase in autism prevalence between 1990 and 1999, despite the phaseout of TCVs that started in 1992.

In addition, the data from Sweden were based on inpatient (hospital) visits only. This limitation (counting a small fraction of the total number of cases) likely accounted for the erratic swings in the annual numbers of autism cases reported in that country. Also, the Thimerosal exposure level based on the Swedish vaccination schedule during this time period was much less (a nominal maximum of 75 μg of Hg by two years of age) than that possible in California (and the United States as a whole) where developing children nominally received up to 237.5 μg of Hg by 18 months of age through the standard immunization schedule. In conclusion, the Stehr-Green et al. study was problematic in its attempt to combine ecological data from three different countries that, relative to each other, demonstrated different vaccination policies and widely different Thimerosal exposure levels.
4. The Hviid et al. (2003) Study

The Hviid et al. [23] population-based cohort study, widely cited by the CDC, compared rates of autism prevalence among individuals who received Thimerosal-free vaccines to those receiving TCVs. The authors report that there was no evidence of increased autism prevalence with Thimerosal exposure.

The study authors stated that the mean age of autism diagnosis within their population was 4.7 years with a standard deviation of 1.7 years. However, cases and controls as young as 1 year of age were included within the analysis. Accordingly, controls that were less than the mean age of diagnosis minus two standard deviations (1.3 years) from that age had a 97.5% probability of actually being individuals who will later develop autism and are therefore possibly misclassified. Similarly, in this study, the mean age for an ASD diagnosis was 6.0 years with a standard deviation of 1.9 years. Thus, the study methodology is questionable because it appears to have underascertained the number of cases diagnosed with autism and ASD.

In addition, rather than counting persons within the cohort, the authors counted “person-years of follow up.” With this technique, each age group (one-year-olds, two-year-olds, etc.) was considered equally, despite the fact that younger age groups were much less likely to receive an autism diagnosis. This again contributed to the undercounting of the cases with a diagnosis of autism and ASD and biased the study towards the null hypothesis (that there is no statistically significant Thimerosal exposure effect on the outcomes observed).
5. The Andrews et al. (2004) Study

The Andrews et al. [24] study was a retrospective cohort study completed using records from a database in the United Kingdom, where autism prevalence rates were compared for children receiving Thimerosal-containing DTaP and DT vaccines. In the Andrews et al. [24] study, Cox’s proportional-hazards ratios were used to evaluate periods of followup in the cohort examined by the investigators using the records in the general practitioner research database (GPRD), a database that was known to have a significant level of errors. These investigators reported that increased organic-Hg exposure from TCVs was associated with a significantly reduced risk for diagnosed general developmental disorders and for unspecified developmental delay (although there was a significantly higher risk for diagnosed tics).

Considering that there are several studies conducted by independent investigators that have found that exposure to Thimerosal is a risk factor for neurodevelopmental delay and disorders [10, 11, 16], the reduced rate of neurodevelopmental delay and disorders with Thimerosal exposure found in the Andrews et al. [24] study suggests possible methodological issues.

This result may have occurred, in part, because other studies examined cohorts with significantly different childhood vaccine schedules and with different diagnostic criteria for outcomes. This difference may also exist because these other studies that found Thimerosal to be a risk factor for neurodevelopmental delay and disorders employed different epidemiological methods, especially with respect to the issue of follow-up period for individuals in the cohorts examined. The method used to measure follow-up period for individuals is a critical issue in all studies examining the relationship between exposures and the subsequent risk of a neurodevelopmental disorder diagnosis, especially in those instances where the postexposure periods for all of the participants in the study are essentially the same. This is because the risk of an individual being diagnosed with a neurodevelopmental disorder is not uniform throughout his/her lifetime. As observed in the present study, the initial mean age for any neurodevelopmental disorder diagnosis was 2.62 years old, and the standard deviation of mean age of the initial diagnosis of neurodevelopmental disorder was 1.58 years old. These findings are highly problematic because (1) any follow-up method that fails to consider the lag time between birth and age of initial neurodevelopmental disorder diagnosis will likely not be able to observe the true relationship between exposure and the subsequent risk of a neurodevelopmental disorder diagnosis and (2) statistically, the mean and standard deviation age of diagnosis as reported lead to the nonsensical result that a significant portion (2.5%) of the children in this study were diagosed with a neurodevelopmental disorder more than six months before they were born (i.e., the mean age minus two standard deviations, 2.62 − [2 × 1.58] = −0.54 years of age).

Another issue with this study is that the authors used a nontransparent, multivariate regression technique to analyze vaccine uptake and autism prevalence data. The study included one dependent variable (autism) and multiple independent variables, including two independent variables (Thimerosal exposure levels and year of birth) that were “correlated” with each other, since Thimerosal exposures increased with time. Thus, the researchers did not report a statistical analysis of the effect of Thimerosal exposure on autism incidence, despite the fact that the authors stated that no such effect was observed. Moreover, the methods used in this study can create a problem in regression known as “multicolinearity.” In this case, since the time variable and the vaccine exposure variable are correlated, they actually compete to explain the outcome effect. Inclusion of the time variable reduces the significance of the exposure variable. Yet, the authors did not explain why they included a time variable that competes with the exposure variable. Unfortunately, the authors of this study never released the raw data so that a valid single-variable analysis could be conducted to ascertain the probability of an association between Thimerosal exposure and the risk of autism.

It is also important to note that the UK Thimerosal exposure (a maximum of 75 μg of Hg by 4 months of age) was not comparable to that in the United States (a maximum of 75 μg of Hg by 2 months of age and 187.5 μg of Hg by 6 months of age). Thus, this study should not be extrapolated to the probability of an autism-Thimerosal association based on the US vaccination schedule.
6. The Verstraeten et al. (2003) Study

The CDC’s published Verstraeten et al. [25] study consists of a cohort analysis of a subset of records from the medical records databases for several of the HMOs whose records were maintained in a central data repository, the Vaccine Safety Datalink (VSD). This study was conducted in at least five separate phases. In the final phase (i.e., the results reported in the publication), the authors stated that there was no relationship between Thimerosal exposure in vaccines and autism incidence. However, no data are reported in the published study to support this conclusion.

Results from the first phase of the study released in an internal presentation abstract by Verstraeten et al. [20] (mentioned earlier) using records from four (4) HMOs showed that infants who were exposed to greater than 25 μg of Hg in vaccines and immunoglobulins at the age of one month were 7.6 times more likely to have an autism diagnosis than those not exposed to any vaccine-derived organic Hg. Within the same abstract, Verstraeten reports that the risk for any neurodevelopmental disorder was 1.8, the risk for speech disorder was 2.1, and the risk for nonorganic sleep disorder was 5.0. All relative risks were statistically significant.

In the second phase of the study, a different approach was taken: exposure was compared at 3 months of age, rather than one month. Results of this phase showed that children exposed to the maximum amount of organic Hg in infant vaccines (62.5 μg) were 2.48 times more likely to have autism diagnosis compared to those exposed to less than 37.5 μg of Hg in vaccines. These results were also statistically significant. No assessment against a “no exposure” control was apparently completed in this study phase.

In the third phase of the study, in which more data stratification methods and different inclusion/exclusion criteria were applied to the analysis, the relative risk of autism for children at three months of Thimerosal exposure dropped to 1.69. At this point, evidence in an email from Verstraeten, the lead investigator, written to a colleague outside of the CDC (obtained by the authors via the US Freedom of Information Act of 1950 as amended), suggests that Verstraeten could have been receiving pressure within the CDC to apply unsound statistical methods to deny a causal relationship between Thimerosal and autism. In this email, Verstraeten states (Figure 1), “I do not wish to be the advocate of the anti-vaccine lobby and sound like being convinced that thimerosal is or was harmful, but at least I feel we should use sound scientific argumentation and not let our standards be dictated by our desire to disprove an unpleasant theory.”
247218.fig.001
Figure 1: July 14, 2000, email from Verstraeten to Philippe Grandjean regarding the risk of harm due to Thimerosal (obtained by the authors via the US Freedom of Information Act of 1950 as amended).

The fourth and fifth phase of the study used records from only two of the original HMOs and incorporated a third HMO, Harvard Pilgrim, into the analysis. Some critics of the study questioned the use of Harvard Pilgrim, as this HMO appeared to be riddled with uncertain record keeping practices, and the state of Massachusetts had been forced to take it over after it declared bankruptcy. In addition, the HMO used different diagnostic codes than the other two HMOs used in phases 2 and 3. Other criticisms include that the study used younger children, from 0 to 3 years of age, even though the average age for an autism diagnosis at the time was 4.4 years. Since half of the children receiving an autism diagnosis would be over 4.4 years of age, far greater than the maximum age in the study at 3 years, this analysis excluded more than 50% of all autism cases from this HMO. Also, the cohort from this HMO contained 7 times fewer individuals than the main cohort from the previous study (i.e., HMO B), and there was no apparent attempt to assess the power of this HMO to show any statistically significant effect.

Also of note is the lack of variability within strata among the different HMOs in the Verstraeten et al. [25] study. By design, a cohort study seeking to assess the effect of some treatment on a subsequent outcome should be designed to maximize the range of the independent “treatment” variable (Thimerosal exposure in this instance) in order to determine if there is indeed an “effect” in the dependent postexposure outcome variable (neurological disorders in this study). However, the authors knowingly stratified the analysis based on the participants’ gender, year of birth, month of birth, and clinic most often visited. This effectively reduced the variability of Thimerosal exposure within the strata to the point that it reduced the capability of the final analysis to find any but the “strongest” Thimerosal exposure-related outcome effects. The problems with such “overmatching” practices have been discussed in detail in peer-reviewed scientific literature and will be treated in greater detail in the forthcoming review of the CDC’s Price et al. [26] paper.

Another methodological concern about the Verstraeten et al. [25] study is related to the issue of the minimum follow-up period required for individuals in the cohorts examined to ensure that all the cases in the cohort will have been identified with a high degree of certainty. This issue has been mentioned as a problem in the previous studies. As mentioned earlier, the method used to determine the minimum follow-up period for individuals is a critical issue in all studies examining the relationship between exposures and the subsequent risk of a neurodevelopmental disorder diagnosis, especially in those instances where the exposures to all participants in the study are the same or essentially the same. This is the case because the risk of an individual being diagnosed with a neurodevelopmental disorder is not uniform throughout his/her lifetime. Any follow-up method that fails to consider the lag time between birth and age of initial neurodevelopmental disorder diagnosis will likely not be able to observe the true relationship between exposure and the subsequent risk of a neurodevelopmental disorder diagnosis. Verstraeten et al. [25] included children in the control group who were too young (down to “0” years of age) to receive a neurodevelopmental disorder diagnosis.

Within this study, Verstraeten et al. [25] still found significantly increased risk ratios for tics and language delay. However, the authors stated that, because these results were not consistent between the HMOs tested, these significantly increased risk ratios could not be used to make a determination of the potential adverse consequences of organic-Hg exposure from TCVs.
7. The Price et al. 2010 Study

In 2010, the CDC published another epidemiology study on Thimerosal and autism [26]. This case-control study was conducted using the records from three managed care organizations (MCOs) consisting of 256 children with an ASD diagnosis and 752 controls that were matched by birth year, gender, and MCO to the children with an ASD diagnosis. Exposure to Thimerosal in vaccines and immunoglobulin preparations was determined from electronic immunization registries, medical charts, and parent interviews. Conditional logistic regression was used to assess associations between ASD, autistic disorder (AD), and ASD with regression and exposure to ethyl-Hg during prenatal, birth-to-1-month, birth-to-7-month, and birth-to-20-month periods. Their published finding was that prenatal and infant Thimerosal exposure from TCVs and Thimerosal-containing immunoglobulin posed no statistically significant risk of autism.

As mentioned earlier, in case-control studies, the main methodological concern is the phenomenon called “overmatching.” This concern for overmatching in the Price et al. [26] study was voiced previously by DeSoto and Hitlan [32]. In their comprehensive analysis of overmatching errors specific to the Price paper, DeSoto and Hitlan [32] stated that “Matching cannot—or should not—be done in a way that artificially increases the chance that within[-] strata exposure is the same; this happens when a matching variable is a significant predictor of exposure and is called overmatching.”

Cases were matched with controls of the same age and sex, within the same HMO and essentially the same vaccination schedule, using the same vaccine manufacturers. DeSoto and Hitlan then state further, regarding the lack of variability of Thimerosal exposure in the Price study, “Across the different years, the average cumulative exposure varies from 42.3 μg to 125.46 μg; while within the birth year stratas (sic), the mean exposures do not vary by more than 15 micrograms.” In other words, the maximum level of variation in Thimerosal exposure in the cases and controls being compared was 15 μg of Hg, as compared to the “83” μg of Hg range for the average cumulative exposures in the cohort studies. Moreover, this range is much less than the range of Thimerosal exposures that could have been used to determine risk including (a) 0 to 50 μg of Hg for one-month exposures, (b) 0 to 190 μg of Hg for seven-month exposures, and (c) 0 to 300 μg of Hg for 20-month exposures. Finally, regarding the Price study, DeSoto and Hitlan [32] concluded, “this paper is flawed. Unfortunately, there is not an analytic fix for overmatching: it is [a] design flaw.”

Prenatal Thimerosal exposure for the children within the study arose from the Thimerosal-preserved inactivated-influenza vaccine given during pregnancy and the Rho immunoglobulin administered to pregnant women to prevent Rh-factor incompatibility injury to the developing child. Unlike postnatal exposure from TCVs in the recommended childhood vaccination schedule, prenatal exposures would not be overmatched in a study design that stratified the participants based on their birth year or HMO. Evidence from the background CDC report regarding the Price study showed a significant risk of regressive autism due to prenatal Thimerosal exposure levels, at exposure levels as low as 16 μg of Hg [33]. However, the risk of regressive autism due to prenatal Thimerosal exposure reported in that paper was 1.86 and yielded a value of 0.072 which was deemed as insignificant based on the authors’ “cut-off” value of . However, values between 0.05 and 0.10 are “marginally significant” and should merit further study. In addition, upon further analysis, it was found that the 2009 background report [33] to the Price et al. [26] study showed that the prenatal Thimerosal exposure model was run in six different ways and that the most reliable methods (those that factored out the postnatal Thimerosal exposure effects) found highly statistically significant relative risks of up to 8.73 ( ) for regressive ASD due to prenatal Thimerosal exposures from Thimerosal-containing influenza vaccines and Rho immunoglobulin products relative to no such prenatal Thimerosal exposures. Curiously, these more compelling results were not reported in the paper. Withholding these data from the publication and, instead, reporting a significantly lower value could appear to constitute scientific malfeasance on the part of the authors of this study.
8. Conclusion

As seen in this review, the studies upon which the CDC relies and over which it exerted some level of control report that there is no increased risk of autism from exposure to organic Hg in vaccines, and some of these studies even reported that exposure to Thimerosal appeared to decrease the risk of autism. These six studies are in sharp contrast to research conducted by independent researchers over the past 75+ years that have consistently found Thimerosal to be harmful. As mentioned in the Introduction section, many studies conducted by independent investigators have found Thimerosal to be associated with neurodevelopmental disorders. Several studies, for example, including three of the six studies covered in this review, have found Thimerosal to be a risk factor for tics [10, 17, 24, 25, 34, 35]. In addition, Thimerosal has been found to be a risk factor in speech delay, language delay, attention deficit disorder, and autism [10, 11, 15–17, 24, 25, 34].

Considering that there are many studies conducted by independent researchers which show a relationship between Thimerosal and neurodevelopmental disorders, the results of the six studies examined in this review, particularly those showing the protective effects of Thimerosal, should bring into question the validity of the methodology used in the studies. A list of the most common methodological issues with these six studies is shown in Table 1. Importantly, other than the Hviid et al. [23] study, five of the publications examined in this review were directly commissioned by the CDC, raising the possible issue of conflict of interests or research bias, since vaccine promotion is a central mission of the CDC. Conceivably, if serious neurological disorders are found to be related to Thimerosal in vaccines, such findings could possibly be viewed as damaging to the vaccine program.”
tab1
Table 1: Methodological issues most common in each of the six reviewed studies.
Conflict of Interests

All of the investigators on the present study have been involved in vaccine/biologic litigation.
Acknowledgment

Funding was provided by the nonprofit Institute of Chronic Illnesses, Inc. and CoMeD, Inc.

Copyright © 2014 Brian Hooker et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Original source http://www.hindawi.com/journals/bmri/2014/247218/