Sometimes, when you’re busy being a special needs mum, you need a gentle reminder……

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Sometimes, when you’re busy being a mum, you forget how keenly your words and actions impact on the lives of  your children.

Last night my lovely daughter reminded me of this in the nicest possible way.

You see, over the course of the last week , we’ve both come down with a truly horrible flu.

My daughter came down with it first and after two days of coughing and feeling utterly blue she woke me up in the middle of the night to tell me that her head felt like it was exploding on the inside.

Without thinking twice I jumped up out of bed to check her temperature and then gave her some juice and some paracetamol.

Once those few things were done I invited her to snuggle up with me in bed and promised her that I’d watch over her all night.

Not long after she’d settled into my bed she rolled over and said;

“Oh mother…. I do believe I may well be in my final hours”.

As dramatic as her words sounded, instead of denying her the right to speak her feelings by rushing in and trying to tell her that she was wrong, I once again reassured her that I would be watching over her all night long and then asked her if she’d like me to get her an icy pole to soothe her dry, sore throat.

She agreed to the icy pole immediately and not long after eating it, fell into a deep, sound sleep.

By the time the morning arrived I too had begun to come down with the same dreaded flu.

So we both went off to visit our local doctor who found that my lovely girl had developed an ear infection on top of the flu, which is why she’d felt like her head  was “exploding on the inside”.

As for me, well I’d already been in the throes of fighting  off a sinus infection, as well as catching the flu, so antibiotics and lots of rest were prescribed for both of us.

Later that night I developed a massive migraine as a side effect of the antibiotics.

In response to my migraine misery, not only did my daughter make a point of coming in and checking on me all through the night, but each and every time she came into my room she would ask me:

“What can I do to make you feel  better mum? Can I get you a glass of water? Would you like an icy pole? Do you want me to hold your hand?”

Each time she did this I thanked her for being so kind and thoughtful and each time she would say “It’s okay mum, I know how bad it feels when you’re head’s exploding on the inside.”

The next day, after the migraine had washed away, I once again experienced those same feelings of both extreme love and gratitude for the way my daughter had chosen to love and support me throughout my own night of “final hours”.

When I tried once again to thank her for being so wonderful, she looked at me in confusion and said;

“Mum, why do you keep thanking me? I was only doing  to you what you did for me when I felt like my head was exploding?”

Her words really made me stop and think, not only about the importance of the way I had responded to her when she had been feeling so ill, but the importance of the ways that I respond to her on a daily basis and how all of the small kindnesses that I shower her with are now coming out in her personality, despite the fact that many believe that children like my daughter are incapable of showing  empathy towards others.

You see, my lovely daughter has High Functioning Autism or Asperger’s Syndrome and many mistakenly  think that children and adults with HFA/AS aren’t able to either experience or express empathy for the suffering of others.

Well, I’m here to tell you that my daughter and many like her, can and do experience empathy towards others.

Especially when they grow up being surrounded by both the benefits and the acknowledgement of having empathy shown towards the unique ways in which they experience every aspect of their lives.

So even though sometimes, when you’re busy being a special needs  mum  and you forget just how keenly you’re words and actions impact on the lives of your children, you may just discover that your children will find their own unique ways to remind you of just how important your words and actions are to them.

And hopefully you too will experience this reminder in the nicest of all possible ways.

 

Autism Awareness and Acceptance – This Autism Mothers Take on the never ending Autism Debate.

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I’ve been on many sides of the Autism Spectrum debate at various times.

I’ve been the mother who’s been devastated by her 4-year-old sons diagnosis of classic or Low Functioning Autism, despite the fact that it was obvious from a very early age that her child was missing all of his milestones and was therefore ‘different’.

I’ve been the mother who’s spent endless hours in therapy sessions teaching her son how to roll over, crawl, sit up and after 4 long years, eventually walk by himself.

I’ve been the mother who for so long, only ever heard hers sons voice in dreams.

Until one day, at the age of 5, after years of speech therapy, he eventually tried to say his own name.

I’ve been the mother that had to stop her son from chewing rocks because he craved the oral sensory stimulation that crunching on rocks gave him.

I’ve been the mother that had to have a special helmet made for her son so that he wouldn’t injure his head during those times when head banging seemed to provide him with his only option for sensory relief after his words had failed him.

I have been there and I have lived through the anguish of having to watch my child self-harm out of frustration or in an effort to gain sensory relief.

For this very reason I’ve also been the mother who has raged over the many misunderstandings as to what Low Functioning Autism actually is and how it impacts on the lives of those who experience it, based on the ways the words of those with High Functioning Autism, have been digested and held up by the broader public as the shining examples of what all forms of Autism should look and sound like.

During those times I have felt the anger of knowing that such words do no justice to the form of Autism experienced by my son.

Yet at other times, I’ve also been the mother who found solace, comfort and understanding from listening too and attending workshops run by individuals with Autism like Wendy Lawson.

So I have both raged against and been inspired to understand Autism in different ways through the words of adults with Autism.

On an individual level, and speaking only as a person in my own right, I can honestly say that if it hadn’t been for the writings of adults with Asperger’s Syndrome, or High Functioning Autism, I would never have begun to question my own little idiosyncratic quirks or discover my own place on the spectrum.

Nor would I have been able to see the signs of Asperger’s Syndrome in my own daughter.

Or have had the information necessary to encourage those health professionals around me to take my concerns for my daughter seriously.

And I acknowledge that I owe a huge debt of gratitude to all of those adults with Autism, both Low and High Functioning, who have been willing and able to speak out.

So I’ve tired really hard to put aside and reconcile my past angers over what I now perceive as society’s misconceptions as to what Low Functioning Autism is and I have tried to understand that those adults who do speak out can no more choose how the world at large interprets their words, than I can.

Yet even though I know that the world at times, spins on its own axis of denial and deceit, and that none of us can predict where and how, or in whose ears, our words will land, I still occasionally find myself wearing my outraged mother’s hat.

You see, I know that my son’s experience of Autism is vastly different to my own experience of Autism and that of my daughters.

The similarities between us are few and the differences between us can be as stark as night and day.

Autism has manifested within all of us in very differing ways.

Our own individual journeys towards understanding  Autism also bear little to no patterns of similarity.

My son was diagnosed at 4 years of age.

My daughter at 13 years of age.

And I in my 40’s.

So I think what we most need to understand when it comes to Autism Awareness and Acceptance, is that there are no hard and fast rules as to how it will either impact on a life, or how those impacts will in turn be understood by those around them.

Some like my son, will be impacted upon profoundly, others like myself, may live a life of otherness for 40 years without ever understanding why, and those like my daughter, will live a life where she will at least have the benefit of knowing why she’s different.

I know that we, as a family, have all benefited from the wisdom of others with Autism.

Just in different ways.

So to me, whether or not adults with Autism have anything valuable to say is no longer the question, fore I know that adults with Autism have valuable insights to share.

The question I think that’s more pertinent for today’s Autism debate is:

Which organizations or individuals are using the knowledge derived from adults with Autism and just what are they using the words of those with Autism to say?

 

Sadly some people still believe that Autism is a male based condition and will always be so……

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I receive some interesting and occasionally disturbing  feedback on my posts.

Like a response I received recently on my post aspergers-syndrome-in-women-a-different-set-of-challenges-by-chatherine-faherty/.

Before I go on to describe the response I received  I’ll give you just a quick recap of  Catherine’s  article in which she states that:

“According to Tony Attwood and other professionals in the field, women with high functioning autism and Asperger’s Syndrome may be an under-diagnosed population.  If this is true, some of the reasons may be attributed to gender differences.”

Catherine then goes on to report that  among the women  with Autism she works with that she has found that  although “women are affected by autism in the same ways as are their male counterparts; they are doubly challenged by the added assumptions that society places on the female gender.”

“Problems related to the [autism] spectrum are combined with problems of society’s expectations of women.  How one looks, what one wears, how one is supposed to relate socially, that a woman is supposed to have a natural empathy towards others,”

Okay so onto the response I received which begins.

“I don’t think it (Asperger’s Syndrome in women) is under-diagnosed.

If things about being a female make types of behaviour that are diagnostic less common in a female then you will have less females.

It isn’t like university entrance or high wage earning where we need gender parity. 

There is enough science to support the type of brain that wold have an ASD is more likely to occur in a male.”

In response to the above statement I’d just like to point out that in a previous post doctors-are-failing-to-spot-aspergers-in-girls-article-by-amelia-hill/  Amelia Hill points out that;

“Dr Judith Gould, who is director of the National Autistic Society’s Lorna Wing centre for autism and co-founder of the Centre for Social and Communication Disorders, said: “We’re failing girls at the moment…..

“Girls are not being picked up because there is still a stereotyped view of what Asperger’s is, which is based entirely on how boys present with the condition,” she said. “Professionals are not up to speed in knowing how girls present.

Tony Attwood, founder of the first diagnostic and treatment clinic for children and adults with Asperger’s, and author of The Complete Guide to Asperger’s Syndrome, agreed with Gould’s estimation of a 2.5:1 ratio of boys to girls. “The bottom line is that we understand far too little about girls with ASDs because we diagnose autism based on a male conceptualization of the condition. We need a complete paradigm shift,” he said.

We are doing many thousands of them a great disservice. They are either not being picked up in the first place, but if they ask for help they are being turned away. Even if they are referred for diagnosis, they are commonly rejected.”

So despite that fact that experts in the field of Autism are now openly calling for a review of the  previously male gendered bias that has been used to both define and diagnose Asperger’s Syndrome,  this respondent still believes that Autism is a male based brain condition.

And it gets worse. The respondent then states:

“I think instead of looking at this they could look at the related issue that as you move higher on the spectrum the gender difference widens.

For those with more severely diminished IQs the gender ratio is nearly 1 to 1 whereas at the “highest” (a concept I don’t believe in truly) functioning closer to ten to one?”

Basically what the respondent is saying is that it’s okay to accept that girls and women can have Autism that occurs at a ratio similar to that of males if they have a “severely diminished IQ” but not okay to accept that girls and women could experience the same ratio of  Autism with males if they have higher IQ’s.

What???????

I’m sorry…….

I don’t know whether to be offended……..

Or merely appalled that such draconian thinking is still occurring in this day and age.

About the only thing the respondent got right is that this isn’t a matter or wanting parity although it is most definitely becoming  a matter of gender of equality, but not because women want to have higher rates of Autism than men, but because women should have the same rights when it comes to being understood, recognized and diagnosed accurately

 

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.

 

Asperger’s Syndrome – Removed in theory but not in practice……

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Just as society is finally becoming more sensitive to the needs of those with Asperger’s syndrome, the diagnosis has been removed from the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

To me this makes no sense what so ever.

In the years since the diagnosis of Asperger’s Syndrome first became included in the DSM, it has helped to create a comprehensive and publicly accepted awareness of Autism Spectrum Disorders as an incredibly diverse set of neurologically based challenges.

As such the term Asperger’s Syndrome has become synonymous with creating a wider understanding of the idiosyncrasies of the human condition and has imparted to many a greater degree of understanding and tolerance towards those who are ‘different’.

In many ways it is difficult to think of another neurological diagnosis that has captured the public imagination more powerfully than Asperger’s syndrome.

Popular culture, most notably television shows like NBC series Parenthood, Alpha’s, and characters like Sheldon from the Big Bang Theory,  have taken the quirks and characters of individuals with Asperger’s Syndrome , who would otherwise have remained on the periphery of people’s understanding, and placed them at the centre of the public’s imagination.

By doing so, the entertainment industry has revealed the worth of Asperger’s Syndrome as a diagnosis that helps make sense of the differences that those with AS display in a positive and liberating way.

Within the Autism community much has been done to increase awareness of Asperger’s Syndrome and to reclaim it as a powerful symbol of Autistic pride.

Before 1994, when Asperger’s syndrome was first included in the DSM, those seeking help for what is now to known as High Functioning Autism, wandered a diagnostic wasteland, sometimes picking up inappropriate labels such as bipolar disorder, schizophrenia, OCD, atypical ADHD.

All of which did little to either accurately clarify or address their needs.

The Asperger’s diagnosis, in contrast, has provided  many with a meaningful and positive identity that has in turn generated a tremendous international self-help movement.

As Temple Grandin, a professor and a prominent autistic American, has said, “the size and voice of the Asperger’s community is reason enough to leave the diagnosis in place.”

Many experts and advocates have argued that a more appropriate response to understanding Autism would have been to develop a more precise definition of Asperger’s rather than removing it.

The fight to retain Asperger’s Syndrome as a viable diagnosis is not about distancing Asperger’s from other forms of autism.

It’s about classifying a particular subgroup in a way that demonstrably adds value to them.

Seeking to absorb and remove the term Asperger’s Syndrome from the community by acknowledging it only in terms of the wider umbrella term of autism has been described as a form of psychological genocide.

After all, no other group within the community is being asked to accept having their own unique understandings of themselves, rolled into just one overall category that eliminates those unique sets of characteristics which they have become known for .

Replacing the diagnostic label of Asperger’s Syndrome by merging it into the overall label of Autism, threatens to remove the unique sets of understandings and connections that have proven to be so valuable both to individuals with Asperger’s Syndrome within the Asperger’s community and with the wider public at large.

So why is the diagnosis of Asperger’s Syndrome, a diagnosis that has created so much awareness and empowered so many of those who would have otherwise remained a marginalized and misunderstood minority within our community, being removed?

Well, perhaps in this instance, the thoughts of Tony Attwood, a leading Asperger’s expert, who has expressed  his concerns that dropping the AS label could dissuade people from being evaluated, may shed some light as to why the diagnosis has been removed from the DSM-5.

Whether the removal of AS from the DSM-5 is a tactical stance designed to try and decrease the rising numbers of those being diagnosed with an Autism Spectrum Disorder by making it less appealing for those on the high functioning end of the spectrum to come forward or not remains to be seen.

Another key issue involved in the removal of Asperger’s Syndrome from the DSM5 is that it also holds the potential to pose significant problems for women on the spectrum.

It has long been documented that women on the spectrum have long faced a consistent wave of diagnostic ignorance. specifically because their symptoms do not match those previously displayed by men.

One can only speculate that the removal of AS from the DSM5 will only further muddy the waters in terms of  a psychologists ability to accurately diagnose and understand women within the Autism Spectrum.

However one thing is becoming abundantly clear…..

Asperger’s Syndrome can be removed from the DSM-5 in theory, yet those who identify as Aspies, can never be removed in practice.

 

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. 

 

Ahhhhhhh…… Sheldon…… How I love your ways…….

This is so my son………..

 

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.

 

Questioning the backlash against parents within the Autism Community?

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Have you ever heard of a group of adults with Down Syndrome joining forces to name and expose the many obstacles placed in their paths while growing up due to negative parenting?

Now before you go there,  please don’t be naïve enough to try and say that adults with Down Syndrome wouldn’t have the capacity to voice such concerns  if they had them.  Many with Down Syndrome have strong intellectual capacities and are out-spoken advocates in their own rights.

Yet still, I can honestly say that I have never  once heard of such discontentment over parenting practices being voiced en mass  within the Down Syndrome community.

So  why is it I wonder, that such a constant stream of criticism over parenting  practices forms such a major area of  concern and contention within the Autism community?

Just why is it that so many adult Autists within the Autism community are so ready to paint targets on the backs of parents?

Is it because they’ve genuinely suffered hatred and cruelty at the hands of their own parents?

Is it because they’ve lived childhood’s full of loneliness and neglect, or experienced undue  parental punishments over misunderstandings such as not being able to look their parents in the eyes when speaking?

Or could it be, that proneness to being hypersensitive to negativity and critical instruction, which forms part of the characteristics of high functioning autism, is itself the reason why so many adults with Autism feel that their own parents let them down?

And if so, are they then applying their own personal experience as the template  to make the further claim that parents of Autistic children need to change their parenting practices?

If that’s the case, I think one has to reasonably ask, given the subjectivities involved, whether or not such a template is the right one to apply?

After all, times have changed, you only have to look at the image above to know that parents are genuinely out there trying to improve their children’s lives, so I don’t think it’s necessarily accurate to paint today’s parents with the same criticisms that arose in the past.

What do you think?