To label or not to label- My personal experience

Soon after the day that my husband made the ground breaking revelation that my son Jeremy was “just odd like me” and implied that it was ‘no big deal’, I went in search for answers.

It was reassuring that my husband loved me, ‘oddness’ and all and that it was no concern for him, but my childhood was intrinsically traumatic. I suffered from chronic and severe anxiety related to social situations, including at school and university, because I was aware that my conversation skills were very poor and I could not relate well to my peers.

When I heard about Autism Spectrum Disorder (ASD)*, I thought that it might be the explanation I was looking for but I wasn’t convinced of it. It is hard to be sure if you have autism because the descriptions of autism are usually from a health professionals perspective (what they see in you) and therefore don’t match the personal experience of autism (what you see and experience yourself). In addition, each person with autism is unique. Autism is very complex especially to someone who knows very little about it and at that stage I knew very little about it.

I thought that if I arranged for myself to be assessed and was found to have autism, then surely that is what Jeremy would have too, it seemed sensible to me to assume that Jeremy had inherited his differences from me, given we were mother and son, even though our differences were different.

I made an appointment with a private psychologist that specialized in autism. My brother wrote a short letter about me at my request and I tricked my mother into providing information on my childhood with the pretence of needing it for mainstream counselling.

Why did I trick my mother (who I love very much and who is now very supportive of our diagnoses) into providing information about my childhood? Unfortunately, my mum did not want me to seek a diagnosis of autism in the beginning. She kept talking about not wanting me to have a ‘label’ and she made many distressed phone calls to my siblings about it. In lieu of mum’s strong objections to my seeking a diagnosis, I was afraid that she would refuse to provide information or would provide biased information about my childhood if she knew the true purpose of the request and so I lied.

It’s a myth that people with autism cannot tell a lie. I can tell a lie if I feel the need to. However, I probably feel the need to lie less often than others (such as ‘white lies’) and maybe because I am less comfortable with the concept of lying and less practiced at lying I may not be as convincing. People who know me would most likely say that I tell lies a lot less than most people, but if I had to lie to save my life I would AND I would do it with conviction. I considered that getting an accurate account of my childhood was crucial for getting an accurate diagnosis and so I perceived the need to tell a lie on that occasion.

I can’t recall exactly how I felt about mum’s objections, by that stage mum and I had disagreed on several parenting strategies already and the shock of her disapprovals had worn off. I disregarded her opinion and her feelings (validating someones feelings was something I was yet to learn about) because her argument didn’t make sense to me.

Many people show resistance getting a diagnosis because of the fear of being labelled. It is true that labeling can be associated with stigma. Stigma is defined as ‘the co occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised1. So perhaps those people afraid of labels have good reason for concern.

However, a recent study has shown that it is the social behaviours characteristic of autism and not the diagnostic label that results in stigmatizing attitudes towards people with autism2. People often notice the different behaviours that people with autism display and misinterpret the reasons for the behaviour attributing them to naughtiness, laziness, rudeness, incompetence or parenting styles etc. I wanted to have a working template for understanding myself that wasn’t based on any of those negative assumptions.

Differences need to be understood properly without value judgment. Having a template on which to study and understand those differences benefits from a label. It has been shown that a reduction in stigmatization of people with autism is associated with increased knowledge of autism (the ‘label’) in addition to more direct contact with people with autism3.

In years to come, when differences are properly understood and celebrated, assuming that we are gradually making inroads in that direction and that is debatable, then we can do away with diagnostic categories and focus on individual strengths and challenges and provide more individualized rather than categorized support.

Unfortunately, I lack the conviction that most lay people can fully comprehend and/or be open to the myriad of differences in brain and body function that exist independent of ‘good’ and ‘bad’ value judgments and how the dominant environment discriminates against them (with or without intent for harm). I’d still like to be proven wrong.

In addition, I needed the ‘label’ to know how to support Jeremy to the best of my ability (including seeking professional support). I didn’t want my sons to experience the extent of anxiety and confusion that I experienced during my childhood. Without the ‘label’ and the associated evidence-based information about how to support it, I personally feel that I could not have understood and supported my children as well as I have.

The psychologist that assessed me asked me what I knew about autism and I replied that I didn’t know much about it because I didn’t want to “waste too much time researching a condition that I may not have”. If you have read any of my other posts you could probably assume that when I decide to research something, I invest a lot of time into it because detail, specific relevance and accuracy are important to me (a few of my autistic traits).

After, two half day consultations the psychologist confirmed that I had Asperger’s Syndrome (an ASD). After I received the diagnosis I met up with my brother and he asked how the appointments went and I said “Just call me Spergs”. Of course, since then I have learned that many people with Asperger’s Syndrome prefer the abbreviation ‘Aspie’. Now, they have removed the diagnostic term Asperger’s Syndrome and instead use the all-encompassing diagnostic term of Autism Spectrum Disorder (ASD)*.

My mum was upset for a while after I received my diagnosis until she talked to one of my sisters who said to her “but mum, it doesn’t change who she is”. That comment wouldn’t have a lot of impact if it was said to me in passing because it is one of several expressions that does not make a lot of sense to me but it proved very useful for mum. I’ve since heard that variations on that phrase have been useful for others when they are informed of a diagnosis of autism and so perhaps it means something to you the reader.

The revelation of ‘it doesn’t change who she is’ was a turning point for mum and these days mum will gladly pass on any information that she comes across on autism because she is now not only accepting of all of our diagnoses but even interested and proactive.

After my diagnosis, I immediately began borrowing books from the AMAZE library. The first books I borrowed were autobiographies of people with autism, which I believe is a good place to start because you get to know people with autism, their strengths and their challenges, rather than just learning about ‘impairments’ from textbooks and manuals.

I was advised not to book Jeremy in for an assessment until he turned three years old because I was told that it was easier to delineate autism from typical development at that age. Booking Jeremy in for an assessment for autism with a psychologist and a paediatrician (he was already seeing a speech pathologist for speech delay) came with fresh and more openly objecting disapprovals particularly from my husband and some members of his family. It was one thing to insist on having myself assessed but not a child and their own ‘flesh and blood’.

When there is something I believe in I will pursue it at all cost (another of my autism traits). After reading more about autism and after my own diagnosis, I was certain that Jeremy also had autism. Actually, that is not true….there was a little voice in my head that said “Maybe everyone else is right. Maybe it is my anxiety and obsessive nature inventing problems” but I felt that the moment that I showed any doubt was the moment people could talk me out of investigating it further. Although, the fact that I seemed so sure that Jeremy would be diagnosed was ‘off-putting’ for many people too, I don’t think there was any approach that could have helped me escape unfavourable judgment and criticism during that process.

I retrospectively documented Jeremy’s behaviour and health from birth and early childhood right up to his assessment, took photos of his many ordered arrangements of toys and secretly videotaped his play. My husband referred to my ‘quest’ to have Jeremy diagnosed as ‘obsessive’.

I was aware that my determination to have Jeremy assessed and my detailed documentation could be labelled as obsessive but now my husband is fully supportive of the diagnosis, early intervention and support that Jeremy has had (and continues to receive) and it is clear that my determination and attention to detail was justified. Although, twenty pages was more than necessary (I can laugh at myself, although it is easier after the fact), it was helpful for the pyschologist to peruse (especially given my poor verbal recounting ability) and it was cathartic.

It was those early months of seeking a diagnosis and the lack of support during that process, which were the most difficult for me. That was my experience and may not reflect what other people remember about it because people’s stories are always different when told from another person’s point of view. I know however, that my experience is similar to that of many other people who have sought a diagnosis for themselves or their children. Fortunately, since then, after dissemination of information and the fear of change has abated, my family including my in-laws have become much more accepting and supportive.

Regardless of the benefits of diagnosis for my sons, I am so glad that I received a diagnosis because now I have a means of understanding myself, which was very important to me. I wanted to know why I was different to most other people and now I know.

More importantly, I like myself better now because I believe that my social challenges are paired with equally unique strengths. Refer to my post on ‘Autistic traits and ability’ for a more detailed explanation of this concept.

With more awareness of my poor social skills, I have been more consciously attempting to improve my basic conversation and social skills, which resulted in increased anxiety for me initially. I have also made slight adjustments in my appearance*, validate people’s feelings more (because feelings make sense because they exist and don’t need a logical explanation) and tend to mock social conventions less than I used to. However, I don’t believe my identity has been compromised. If fact, I have a better understanding of what matters to me and I am more outspoken about what I believe in.

In addition, I have learned so much about autism and it has helped me to have a better understanding of people generally, sometimes above and beyond typical assumptions that other people might make and I will cover this in my next post.

*I will refer to Autism Spectrum Disorder as ‘autism’ for the rest of this post because I am uncomfortable with the use of the term ‘disorder’.

*The activist in me is uncomfortable with the fact that I felt the need to change my appearance. However, essentially changing my appearance, in this instance, mean’t wearing ‘joggers with jeans’ less often and paying attention to what most other people wear so that I can copy those aspects that I am most comfortable with. Often, it is a case of ‘No, I’m not wearing that’, ‘No,  not that’, ‘Ok maybe I could wear that sometimes’. I still don’t wear make-up and I wear my hair in a pony tail almost every day and I have no problem with the way other people chose to dress. In fact, I feel more comfortable around people who wear ‘joggers with jeans’.

References:

  1. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health 2013; 103(5):813-821
  2. Butler, R.C and Gillis, J.M. The Impact of Lavels and Behaviors on the Stigmatization of Adults with Asperger’s Disorder. Journal of Autism and Developmental Disorders 2011; 41:741-749
  3. Milacic-Vidojevic, I. Gligorovic, M. Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry 2012; DOI: 10.1177/0020764012463298
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Who exactly does ‘Autism Speaks’ speak for?

It would be remiss of me not to share what is happening on the world stage with regard to the organization Autism Speaks and its most recent alarming contributions to autism stigma. As such this post is dedicated to concerns regarding the ability of Autism Speaks to speak on behalf of people with autism.

According to their website, Autism Speaks is the “world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals and their families”.

I do not like to discredit people or organizations when their intent is for good, but Autism Speaks appears to have disregarded the pertinent advice of adults with autism, on many occasions, regarding more inclusive language and practices and as such is deserving of being called out for their errors of judgment.

Unfortunately, Autism Speaks has many times created substantial negative publicity towards people with autism, which is not in line with the evolving understanding of autism and they are facing a backlash from many members of the autism community.

Recently, Autism Speaks put out a ‘call to action’ that offended many members of the autism community. In fact, it offended author, speaker and educator and autism consultant John Elder Robison, so much that he resigned from his Science and Treatment Boards at Autism Speaks.

Autism Speaks ‘call to action’ was a generalized series of negative portrayals of children with an Autism Spectrum Disorder (ASD) and their families. In their ‘call to action’, Autism Speaks refer to the “autism crisis” and repeatedly and emphatically state what they believe ASD is. Specifically, they asserted that:

“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future”

“We’ve let families split up, go broke and struggle through their days and years”

“These families are not living”

“Don’t our families deserve it? American has always been about its great people”

People with an ASD are among our great people, my family is living and I am not in despair.

Of course, some people may view their lives and challenges like Autism Speaks suggests, but as the world’s largest autism science and advocacy organization how could they possibly not see how prejudiced and fear mongering their messages are towards ASD and hence people with an ASD.

Lydia Brown a disability rights activist, scholar and writer, exposed an even more alarming development in her blog of an alliance between the Judge Rotenberg Center (JRC) and Autism Speaks. The JRC is the only facility in the United States that makes extensive use of aversives, including electric shock and withholding of food in its treatment and behavioural interventions for students with special needs.

What we are also grappling with here is the dichotomy of disability discourse. The Medical Model of Disability determines disability as the result of impairment in the individual. No account of the effect of the environment is taken into consideration1. The Social Model of Disability determines the disadvantage or restriction of activity is caused by a contemporary social organization which does not take into account people with impairments and thus excludes them from mainstream social activities2. Social stigma then contributes to further health inequities through affecting availability of resources, social relationships, psychological and behavioral responses and stress3.

In a sobering article by Reindal (2000), on the ethics of gene therapy with regard to disability, Reindal argues that social models of disability and the views of the individuals with impairments should be given greater priority in academic discussions1. A major concern with the dependence on the medical model of disability is that it leads to value judgments by the unimpaired resulting in the consideration that the lives of those with an impairment as less worthy1. Reindal (2000) also argues that as a consequence of the medical model, resources are directed into impairment-related research and intervention in lieu of social change for the inclusion of people with impairments1. Autism Speaks is a prime example of this in action.

In his analysis of the social model of disability with regard to ‘learning disabilities’ as opposed to physical disabilities, Goodley (2010) outlines important considerations including embracing notions of distributed competence, ability, intelligence, capacity and ‘differently articulate’, sensitivity to the social nature of all human beings (and their abilities) and recognizing the social and cultural formations of (in)ability2. Autism Speaks is failing in this regard.

Autism Speaks does not even have one openly autistic person serving on the Board of Directors or working in a leadership role as an executive or administrator so how could they possibly speak for people with autism?

You can read more about the Autism Speaks controversy at the following sites:

www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/

www.adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

References:

  1. Reindal, S.M. Disability, gene therapy and eugenics – a challenge to John Harris. Journal of Medical Ethics 2000; 26:89-94
  2. Goodley, D. ‘Learning difficulties’, the social model of disability and impairment: Challenging epistemologies. Diability & Society 2001; 16(2): 207-231
  3. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health 2013; 103(5):813-821

The Stigma of Parenting

At the end of this article, I want you to tally up your score to see how you rate as a parent….NOT! But it may have almost seemed like a reasonable request given the how readily advice is given on parenting in magazines, books and on websites.

The awareness that we can affect the course of our children’s life journey has made us paranoid that every little thing we say and do could mean the difference between them being unhappy and happy in life.

Advice is wonderful; pick and choose which strategies you and your family feels most comfortable with but avoid sources of advice that suggest that their way is the best way for everyone and/or that you will be a ‘bad’ parent or ‘practice bad parenting’ if you choose to do things differently.

There is no ‘good’ or ‘bad’ parenting, just different parenting styles and different choices by different parents under different circumstances for different children.

With regards to your own parenting, don’t ask how you can be a better parent; ask how you can help your child to achieve a specific goal or to manage a specific challenge. Doubting your overall parenting is not helpful and it puts your mental health at risk by increasing your anxiety and feelings of guilt.

Just recently Jeremy expressed an observation that he made to me. He said “Dad is the one who tells us what to do and that is what he does at work, he teaches people and you are the one who comes up with new ideas! You are like a scientist!” I loved that observation of course and my new title of ‘Work at home scientist’.

I reiterated what Jeremy said to my husband, who in his usual quick witted but not always tactful manner said “Yeah and the boys are your lab!” I laughed because I understood his sense of humour but some of you may already be making assumptions about me, given that comment.

I am not the ‘refrigerator mum’ that psychologists referred to before they disproved that prejudiced theory1,2 as responsible for autism in our children. I love my children deeply and I express that with plenty of hugs for both my boys and for Jeremy kisses (Damian hates kisses).

However, I do have a diagnosis of Autism Spectrum Disorder. Given that knowledge, would it be unreasonable to assume that you might judge my parenting ability by comparing it to those parents without a diagnosis of autism either subconsciously or consciously?

Recently, I read a disturbing post on a FacebookTM page promoting awareness of autism. Mostly, they post really uplifting articles but this time it was from an anonymous psychologist who made some very unfair judgements and generalisations:

“Truth be told there are days when I feel like a hanger-on in the court, part of the retinue of hired help. A participant in the parade the parents surround themselves with to show the world their level of commitment. Together we “professionals” form a palisade behind which the family hopes to hold off intrusions form the greater community. But, the moment we buy into the argument that “the world needs to change” (and not the family) we become unwitting diplomats in defence of dysfunction”

Clearly, the psychologist was blaming the parents for the behaviour and/or mental health of his clients that had autism. I and many other parents of children with autism who read that article were deeply offended with good reason.

To make matters worse, one reader made the following comment under the post:

“I think parenting is the biggest problem with autistic children. Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else. They have the attitude that it’s never the parent’s fault how a child turns out when in fact it is. It’s a pattern I see on all the Autism pages and groups. Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting. There are a lot of good teenagers out there autistic and not…but they choose not to see that because it doesn’t live up to their stereotypes. The people who whine about blaming the parents are the worst parents of all, after all Autism is genetic.”

I feel the need to address that highly prejudiced comment, sentence by sentence.

“I think parenting is the biggest problem with autistic children”

The author of that comment has shown from the beginning her position of extreme prejudice by referring to children with autism as a ‘problem’.

“Instead of putting out the effort or taking responsibility for their own behaviour and bad parenting ideas they blame the Autism and everything and everyone else”.

By definition, autism is the reason for atypical behaviour not an excuse. In fact, diagnosis of autism is made based on those restrictive and repetitive behaviours and the behaviours that represent social communication challenges in the first place.

The facts are that mother-child relationships of children with autism have been shown to be of good quality2,3,4 and even when under significantly more stress due to the increased challenges of parenting a child with autism cope just as well with parenting tasks as any other mother4.

“It’s a pattern I see on all the Autism pages and groups”.

That is because the author is clearly more ignorant than most of the people on the pages and groups that she refers to. People who are members of autism pages and groups are much more likely to have more experience and knowledge of autism than people who are not members and so lack the prejudice of the average person with regard to autism (as would be discussed on more general FacebookTM pages and groups).

“Would the parents have accepted help? Probably not. We need to treat families, not just individuals, and it isn’t someone else’s responsibility to fix another’s bad parenting”.

Parents with children with autism are seeking help all the time, I am one example of that and every other parent of a child with autism that I know also does that, so her comment is an unfair assumption and exposes her biased opinion. The author says that families not individuals need to be treated, which most therapists actually do (Jeremy’s child psychologist worked primarily with me, providing me with strategies for Jeremy’s behaviour and other therapists have trained me to administer basic therapies at home in between appointments) but then she contradicts herself by saying that no one else should be responsible for ‘fixing’ another’s ‘bad’ parenting.

It is not ‘bad’ parenting; it is the need for additional strategies to help the child with autism cope with their unique challenges. In fact, it is an important aspect of the overall management of autism that families are supported, educated and guided by general practitioners and other health care professionals5.

“There are a lot of good teenagers out there autistic and not, but they choose not to see that because it doesn’t live up to their stereotypes”.

The author is forgetting that autism by definition is a ‘spectrum’ and that each child will have different challenges and therefore a different expression of challenging behaviours. Was I an example of a more functioning teenager because I had a more passive presentation of autism and I said nothing to anyone and suffered in silence? No of course not.

Most parents of children with autism are aware that each child on the spectrum is unique. I have mostly found that it is the ignorant people that rely on stereotypes and sure enough, the author is employing the use of a stereotype in the first place by referring to ‘good’ and ‘bad’ teenagers.

“The people who whine about blaming the parents are the worst parents of all, after all Autism is genetic.”

And there we have it, the icing on the cake; the author implies that a person with autism must be a flawed parent.  Firstly, she says don’t blame the autism for the child’s behaviour but then she contradicts herself by implying that parent probably has autism and that autism must make them an inferior parent.

In addition, according to the author, because I am ‘whining about blaming the parent’, I am the worst parent of all. Like anyone else, I am not perfect but I know that I have reached a point in my life with parenting where I confidently and consistently apply effective strategies to help my children overcome their challenges and I love and respect them like no-one else ever could. My ‘whining’ as the author states it, is me expressing the feelings of alienation and outrage due to her prejudiced comments and if there is one thing I have learned over time you should always validate people’s feelings.

It must be remembered that parents are not born into their carer roles regardless of disability and that they are constantly learning and evolving. In fact, a recent journal article on mothers of children with disabilities that I read, highlighted the unique skills and competence that the mother acquires and refines over the course of their experiences ‘through the process of negotiating, advocating and mediating on behalf of their children, at times resisting or challenging the dominant social order, educating others and so on’6.

The authors of the article also argue that ‘mothers are more than allies to their disabled children, as they experience directly and by proxy many of the discriminatory practices and attitudes their disabled child face’6.

Indeed, families of a child with autism have been shown to experience significant stigmatization from the community in the form of blame for the onset of autism or its deterioration, social avoidance, pity and contamination7.

An excellent review on the effects of stigma on population health inequalities states that ‘stigma thwarts, undermines, or exacerbates several processes (i.e., availability of resources, social relationships, psychological and behavioral responses, stress) that ultimately lead to adverse health outcomes’8.

Parents are people in their own right, imperfect but doing their best for their child/children who they love. They deserve respect as individuals and should not be stigmatized. Stigma is an extra disadvantage that we all have the right to do without.

Note: AMAZE produces an Alert Card that can improve awareness of bystanders when the behaviour of your child is attracting unwanted attention. Details of this card can be found on the AMAZE website.

References:

  1. Folstein, S.E and Rosen-Sheidley, B. Genetics of autism: Complex aetiology for a heterogeneous disorder. Nature Reviews Genetics 2001; 2: 943-955
  2. Orsmond, G.I. Mailick Seltzer, M. Greenberg, J.S. Wyngaarden Krauss, M. mother-child relationship quality among adolescents and adults with autism. American Journal on Mental Retardation 2006; 111(2): 121-137
  3. Montes, G and Halterman, J.S. Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics 2007; 119:e1040-1046
  4. Smith, L. E. Greenberg, J. S. Mailick Seltzer, M. Hong J. Symptoms and behavior problems of adolescents and adults with autism: Effects of mother-child relationship quality, warmth, and praise. American Journal of Mental Retardation 2008; 113(5): 387-402
  5. Myers, S.M and Plauche Johnson, C. Management of children with autism spectrum disorders. Pediatrics 2007; 120: 1162-1182
  6. Ryan, S. Runswick-Cole, K. Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society 2008; 23(3):199-210
  7. Milacic-Vidojevic, I. Gligorovic, M. Dragojevic, N. Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry 2012; DOI: 10.1177/0020764012463298
  8. Hatzenbuehler, M. L. Phelan, J.C. Link, B.G. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health2013; 103(5):813-821

Introducing Autism: A personal account

“He’s just odd like you!” my husband grinned; his humour had exposed a truth that I was previously unaware of. I had been expressing my concern at my two year old son’s peculiar behaviour to my husband when he uttered the words that forever changed the way I interpreted the world and how I thought the world interpreted me.

I had sometimes reflected on my life with the purpose of trying to understand past experiences where it was obvious that I was completely unable to converse or where I had exhibited extreme vagueness beyond what would be considered a personality trait and yet in contrast to that, I excelled academically. However, until my husband’s comment that day, I did not know that I appeared generally ‘odd’.

What occurred to me next was that if my son had inherited the difference that made me appear ‘odd’ to others then he might experience a life like I did. All I could think about was that I didn’t want him to have a childhood like mine, being unable to relate to and being afraid of my peers. I knew then that I was going to do everything I could to find out what it was that my son and I had in common that made us different so that he could have a ‘head start’ finding his niche in the world.

Shortly after that, perhaps days or weeks, I watched a documentary on Aspergers Syndrome (AS). I hadn’t intended to watch it, it just happened to be on when I sat down to watch TV and it caught my interest such that I didn’t change channel.

The reason it caught my interest was that it referred to an Autism spectrum. It had previously occurred to me that my communication difficulties were like a form of Autism but I was unaware that Autism existed on a spectrum until then. I was only aware of the more extreme presentation of it without any understanding of what a person with Autism was thinking or feeling. Although I couldn’t relate to everything that the documentary addressed, Aspergers Syndrome described as an Autism Spectrum Disorder (ASD) was the closest that I had come to an explanation that fit.

Broadly speaking an ASD is a complex neurological condition which affects social communication and is also characterised by restricted and repetitive patterns of behaviour interest and activities*. As a Spectrum Disorder it represents the wide range and complexity of challenges and abilities of people with an ASD.

According to one of my most favourite books on ASDs, ‘Inside Asperger’s Looking Out’ by Kathy Hoopmann:

‘In general, a person with Asperger’s syndrome, or high-functioning autism, is someone who may have:

  • Difficulties relating to others in social situations
  • Difficulties understanding nonverbal communication
  • Heightened sensitivity to touch, sight, hearing, taste and smell
  • Set routines and a strong preference for order
  • An intense ability to focus in specific interest areas
  • A great loyalty towards others
  • A unique mind which is able to see life from a new perspective’

Another of my favourite books ‘Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models’ by Norm Ledgin, lists positive traits of ASD including: a natural sense of fairness, justice and honesty, being creative in several interest areas and having an appealingly droll sense of humour.

By creating this blog, I hope to promote an awareness of the positive traits of ASDs because there are many and they deserve to be recognized. I do not believe that we can adequately support people (in an environment that caters primarily for those without an ASD) without first having respect for them. Being aware of what people with an ASD can achieve because of the ASD rather than in spite of it, may help foster respect.

Primarily this blog is designed to offer insight for parents, teachers and health professionals and informed guidance to parents on how to support their child with an ASD.

*My understanding of Autism has moved beyond the medical diagnostic criteria since writing this post. I never really believed that it was a disorder but have come ‘full circle’ on understanding it to be a disability (according the Social Model of Disability) and a part of the neurodiversity paradigm. I encourage you to read this article by Nick Walker (a guru in the neurodiversity paradigm) for a more nuanced understanding of what Autism is. Unfortunately, my early posts may contain ableist comments. For instance, people should not have to “achieve” in order to be respected.