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

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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’

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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!)

 

The lost soul inside.

Dark-digital-art-by-David-Ho9

I am,

An open book,

With pages,

Missing.

 

I am,

An old film,

With frames cut,

Out.

 

I am,

An imposable puzzle,

With secrets,

Written on the back,

Of every piece.

 

I am like a memory,

Shattered into so many,

Small pieces,

That no one can ever,

Seem to remember me,

Whole.

 

I am,

An old pocket watch,

Lost in the sands,

Of time.

 

I am a little box,

With feelings locked inside,

But you can’t open me,

Because,

I have no key.

 

I am the kid,

That everyone see’s,

Yet still somehow,

Never seems to notice.

 

I am the child,

That speaks,

Yet no one ever hears,

The words I cry. 

 

I am the flame,

That will soon,

Go out.

 

But for you,

I will use,

The last,

Of my fire,

To keep,

You safe.   

This poem was written by my middle son just a few days ago. I know it has been tough on him growing up as the middle child, anchored as he is,  on either side, by siblings on the Autism Spectrum.

His words say it all and I am so very proud of his  extraordinarily sensitive and caring soul.

“Those of us who are too gentle to live among the wolves”

Artwork by Jennifer Healey

“I am one of the searchers.

There are,

 I believe,

Millions,

Of us.

We are not unhappy,

But neither are we really content.

We continue to explore life,

Hoping to uncover its ultimate secret.

We continue to explore ourselves,

Hoping to understand.

We like to walk along the beach,

We are drawn by the ocean,

Taken by its power,

Its unceasing motion,

Its mystery and unspeakable beauty.

We like forests and mountains,

Deserts and hidden rivers,

And the lonely cities as well.

Our sadness is as much a part of our lives,

As is our laughter.

To share our sadness with one we love,

Is perhaps as great a joy,

As we can know,

Unless it be to share,

Our laughter.

We searchers are ambitious,

Only for life itself,

For everything beautiful it can provide.

Most of all we love and want to be loved.

We want to live in a relationship,

That will not impede our wandering,

Nor prevent our search,

Nor lock us in prison walls;

That will take us for what little we have to give.

We do not want to prove ourselves to another,

Or compete for love.

For wanderers, dreamers, and lovers,

For lonely men and women who dare to ask of life,

Everything good and beautiful.

Are those of us,

Who are too gentle,

To live among,

The wolves.”

Words by  James Kavanaugh

Artwork by Naotahattroi.com

 

“Never let them tell you that silence isn’t beautiful”

1079091_680635995283721_2010694365_o

“I read her eyes like paragraphs

And her tears like chapters,

For she didn’t have much to say,

With words,

But rather,

Silence.

And never let them tell you,

That silence,

Isn’t beautiful.

For silence is what happens,

When words fall asleep

And you must carry,

The belief,

That one day,

They will,

Wake up,

Inside of you.”

Words by Christopher Poindexter.

Artwork by Daniela Hallgren.

 

“My body is full of stars that never learned their names”.

Artwork by Carne Griffit

Artwork by Carne Griffit

“I am filled with things and I battle feelings,

I have never wanted to exist inside of me.

I lack too much confidence and I carry,

Too much sadness,

And my body is full of stars,

That never learned their names.

I wear my insecurities,

Like pockets,

And I fill them,

With my fears,

And my hands are growing tired,

From reaching down into them to hold,

The feeling of being afraid.

I am afraid.

Always,

Afraid.

Afraid like chimes,

When the wind lips,

Are sealed.

Afraid like your eyes,

When the stars,

Fall asleep in the black.

Afraid like dreams,

When they realize they are just dreams,

And that reality,

Is that one scar that will never,

Fade away.

I am,

Terrified.

Terrified that the things inside me,

Are the things that will keep me,

From ever finding a home,

Inside someone else.”

Words by Christopher Poindexter. Artwork by Carne Griffit.

Could starting up and running a Facebook Page be for you? Some of the benefits and pitfalls that you may need to be aware of.

facebook-logo-2

A few weeks ago I started a Facebook page and I must say that the entire process of doing so was an incredibly easy one.

At every stage along the way there where prompts reminding me of what needed to be done and even suggestions as to how to do them more easily.

Yet, whilst the mechanics of if have been remarkably easy, by far and away, the hardest part of starting up a Facebook page has been finding the right ways to express what it is exactly,  you want  your  page to achieve.

In my case, I wanted to create a page that focused on the female experience of living with Asperger’s Syndrome / High Functioning Autism.

Which in itself sounds fairly straight forward but in actual fact  has proven to be far more difficult than I had at first thought.

So simply having an idea, whether it be specific or not,  as to what you’d like your page to be about, still leaves you only half way there and this is because,  even though you may have a clear concept of what it is you’d like to discuss, share or achieve on your page, others may have very different ideas as to how they perceive or wish to interact with your page.

For instance, even though my page is dedicated to primarily expressing and exploring the experiences of women with Asperger’s, it has been joined by several people who are  either the parents of daughters with Asperger’s Syndrome or the partners of someone with Asperger’s Syndrome.

This is fine by me and for the most part I applaud parents for being open enough to listen too and learn from,  where relevant, the experiences of women who have been in their children’s shoes, but, there are times when either I myself, or someone else, will share a post or a comment, that whilst not designed to hurt the feelings of non-Asperger’s women or parents, never the less, becomes perceived as doing so.

In such cases, the negative comments made by those who feel slighted, often effectively shuts down  any and all further discussion surrounding whatever the topic of the post may have been.

This remains an issue that I am unsure how to confront, as even those people who run Facebook pages that have taken the time to make it very clear that they are designed first and foremost for a specific purpose, still find themselves  in the predicament of having to try and clear up other people’s misconceptions of their comments or posts.

It seems that no matter what you do you can never please everyone, yet I’m  still far from convinced that this fact alone means that one should settle for the potential of offending everyone either.

fblikeAnother issue that has  become somewhat of a quandary to me is the way in which “likes” for particular posts are being both attributed and distributed by Facebook.

For instance, running a much smaller page on Facebook I’ve found that often the bigger pages will pick up on one of my posts and “share” it on their own pages.

Now I don’t mind this happening at all, after all the aim is to spread awareness, and when it first began happening I thought it was a good thing as it was providing my page with exposure.

However this turns out to be less the case because in the process  of the bigger pages doing so, the “likes” for whatever post they’ve chosen to “share”  end up becoming  attributed to their page’s alone.

This means that although it’s may be my post, from my page, that people may be “liking”, the  fact that it is being distributed on a larger page means that those “likes” never make it back to or become attributed to, my page.

Normally this wouldn’t be so much of a problem, however, the way  in which Facebook chooses to promote  ‘not for profit pages’ makes it so, as the capacity of any such page to reach new members , depends entirely upon the amount of “likes” it receives.

The more “likes” a page receives, the bigger the page becomes and the size of the page decides how high up on the list of recommended pages, it will appear on Facebook.

The higher up the list a page appears, the more likely it is that it will continue to attract new members and therefore grow.

So, under this system, if  bigger pages continue to be the sole beneficiaries  of the  “likes” they receive  for “sharing” smaller pages posts, then effectively the  bigger pages will continue to boom and the smaller pages will continue to remain just that, small.

This to me sets up a kind of dog eat dog system of promotion, which is something to bear in mind and be prepared for, if you are thinking of starting up a Facebook Page.

So although Facebook makes it incredibly easy to start your own Facebook Page, these are  just  some of the issues associated with starting up and running a Facebook page that you need to be aware of.

In the end, whether or not you choose to start-up a Facebook page, may well all come down to a matter of deciding what it is you want to achieve and whether or not that goal can best be achieved via Facebook.