Querying the function of functioning labels

As an Asperperson with a good job, a bunch of achievements and a couple of books, I get it all the time. I’m sure you’ve heard this or similar said about either yourself or someone you know. It’s very common and very fraught. It is the functioning label. ‘Oh Jeanette’, they will say ‘but you’re very high functioning.’  This is a dangerous statement for a  number of reasons which I’ve listed here:

  • Function is a subjective label. Who is to say whether I am high functioning, low functioning or not functioning at all? It doesn’t really describe a quantifiable state.
  • The idea of functioning is premised on a ‘norm’ and almost always a neurotypical norm at that. The more a person deviates from this apparent and arbitrary norm, the lower their level of functioning. I don’t like the idea of basing an assessment of someone’s capabilities in this manner.
  • People who are often put in the ‘low functioning’ group tend to be people who don’t speak. The assumption around people who do not speak is that they must have a severe intellectual disability. This is frequently not true. People with Autism who started speaking at older ages often state that they knew everything that was going on all the time. So who’s to say that speech is the holy grail of function? I was lucky enough to know Anne MacDonald. She did not have Autism but she had cerebral palsy. For those not familiar with the story, Anne was kept in a children’s home for children who were apparently severely affected by intellectual disability and who had no way of interacting with the wider world. This place was a hellhole and many of the young people and children there were just as intelligent as you or i but had no speech. Anne went on to earn a double degree, co-write a book and ‘speak’ all over the world (with the aid of communication technology). She won the Disability Day award in 2009. She was an absolute luminary in the disability world and she never uttered a word. The whole idea that speaking and intellect are inexorably linked is very problematic. Here’s a link to Annie’s book, ‘Annie’s Coming Out’: http://www.amazon.com/Annies-Coming-Out-Rosemary-Crossley/dp/0140056882/ref=sr_1_2?ie=UTF8&qid=1414904158&sr=8-2&keywords=Annie%27s+coming+out
  • People can change over their lifetime. To slap a functioning label on a child may be dooming them to a life of underachieving and being given inappropriate services and support.
  • Finally, what does functioning actually mean? I have always been described as a ‘high functioning Autistic person’ by clinicians. However, I spent five years in intense distress, being extremely suicidal, being imprisoned and an involuntary patient in the psych ward, feeling so awful that at one point, I asked a doctor to give me a lobotomy. Is that high functioning?

These labels are not helpful as far as I am concerned. I never use them myself when talking about myself or other people on the Autism spectrum. I think the medical profession can do a bit better than this as it does not serve much of a practical purpose for people on the spectrum.

Instead of talking about their level of functioning, how about we describe people based on their individual characteristics; their strengths, weaknesses, loves, foibles, issues and passions, rather than giving them an inappropriate and outdated functioning label.

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The agenda around gender in Autism

I am an Autistic woman.  I was diagnosed with Asperger syndrome in 1994, a time when few people outside of a select group of mental health professionals knew anything about the more ‘Aspie’ part of the Autism spectrum.

When I got my diagnosis, I was told that being a woman with Autism was really rare. Most people on the Autism spectrum were boys. They lacked empathy, they did’t understand nonverbal cues, they couldn’t hold conversations, they were kind of flawed geniuses and liked maths and physics. Oh, and they all liked trains apparently, or trams and buses if they were a bit atypical. Of all these attributes, none of them involved people with Asperger’s being girls. Girls on the spectrum were – according to psychiatric wisdom – an anomaly. So I was an anomaly amongst anomalies and nobody knew anything about how to make my life better. I didn’t take this news very well.

As I progressed through life in a somewhat haphazard manner, I developed a mental illness. I found myself in a hospital in country Victoria. The chief psychiatrist told my parents that I couldn’t have Autism as I was sensitive, and didn’t like maths or trains and most of all, I didn’t fit the limited number of Aspies this man had treated, all of whom were boys. I gained a diagnosis of Borderline Personality Disorder – apparently a very common misdiagnosis for Asperwomen, and spent the next few years being told how dysregulated my emotions were and what a nasty manipulative little attention-seeking borderline I was. Not nice.

Eventually, I came to terms with my Asperger’s diagnosis. I saw a psychiatrist who specialised in treating people on the Autism spectrum. I got in touch with Autism Victoria (now known as Amaze) and borrowed books and videos from their library. I came across author and advocate Wenn Lawson. authors Donna Williams and Liane Holliday-Willey and of course the amazing Temple Grandin. Apparently I was in good company. I made a valiant attempt to join the ranks of notable Auties by writing an autobiography, but I still hadn’t met a lot of women on the spectrum. I had the occasional twinge of doubt that maybe to be Autistic I needed to like maths or trains or something.

A couple of years later I was asked to speak at a conference about women and girls on the Autism spectrum. The first day was your standard Autism conference: A bunch of speakers – including me – standing up and talking about what we were experts in to a group of mostly clinicians with a smattering of Autistic people. But the second day of the conference was for women on the spectrum only. I was in a huge room filled with other spectrumites…girl spectrumites at that. I have not doubted my membership of the Autism club ever since. I felt like I was in a room full of people just like me. It was wonderful!

I now belong to a sort of network of Autistic women – there’s quite a few of us. We’re all advocates and we work to raise awareness of Autism among women. I have discovered that women on the Autism spectrum are generally a little bit different to our brothers in the Autie club. There are still issues for some of us in regard to getting a diagnosis or even if we have one, of getting professionals to understand out Aspiness is there, albeit in a female sense. Things have certainly improved since my days in the 1990s with nobody believing a sensitive, literary, artsy girl could be on the spectrum, but there is still a ways to go.

I am involved with a great advocacy organisation called Autism Women Matter which works on these sorts of things. Here’s their website: http://www.autismwomenmatter.com  – check it out. It’s good. My friend Tania Marshall has also written a great book on girls and Autism called ‘I am ASpiengirl’ –www.aspiengirl.com – which I strongly recommend.

Being an Asperwoman is a huge part of my identity thee days. I’m so glad I never listened to the Dr Doubtfuls and instead sought out a world where I fit in. I really hope that others can find the same sense of belonging and inclusion as I have.

 

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Jeanette hard at work doing some advocacy (and loving it)

Normal? No thanks

I am a proud Autistic person. If an Autism ‘cure’ became available I would not take it. I would not even consider taking it. My Autism is part of what makes me ‘me’. In some situations I find myself doing that old social chameleon thing – more out of habit than intent – but mostly I’m Autie through and through. I certainly don’t see myself as inferior to neurotypical folks. I do not apologise for my Aspieness and  I recognise the very large amount of positives – and some negatives – that Autism gives me.

Sadly, a lot of the word does not share my view. They seem to see Autism as an aberration or something which is only an issue, a problem and a deficit, They hold the view that being non-Autistic is better than being Autistic, and unfortunately, a lot of them have no shame in sharing those views with people like me.

Here is an example of one such instance:

I had a book launch for my ‘Wonderful World of Work: A Workbook for Asperteens’ earlier this year. It was at the National LIbrary of Australia. It was one of the coolest things I’ve done in my life. I was very happy. I gave a presentation prior to signing books and a lot of it was about working with the strengths of Autistic young people, focussing on what they can achieve and helping them achieve it. In true Jeanette style it was very affirming and self-advocate-y.  After my presentation we went to the foyer of the library and I signed books. A friend of a friend came up with her worky workbook, ready for my authorial ‘John Hancock’. As I gave it back to her she said ‘you know, you don’t have to tell people you’ve got Autism’. I responded with ‘what?’ She went on: ‘You know, you could pass as ‘normal’ – as if this were the pinnacle of human existence. I explained to her that I did not wish to be seen as normal – whatever it may mean – and that I like myself just the way I am – as Autistic as God made me.  My first act on returning home was to unfriend the woman on Facebook.

Sadly, this woman is not alone. A lot of people tell us that ‘you don’t look Autistic’ or ‘You’re just like everyone else’. I want a world in which people understand how dismissive and offensive this kind of thing is. I sort of view Autism as a culture, with its own ‘language’ and set of commonalities. Could you imagine if someone went up to Barack Obama and told him ‘you know, you could pass as Caucasian if you wanted to?’ There would – rightly – be an outcry. It will be nice when our Autistic identity is recognised and people who tell us how ‘normal’ we are as if it were a compliment will be roundly criticised and censured.

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Me at book launch – May 2014

‘Autism and resilience? Are you sure?’

Last year I was given the amazing opportunity to speak about Autism and resilience at the TEDx Canberra conference. At the after party I met a journalist who was covering the TEDx conference for the local paper. She asked me what I had spoken about. I responded ‘Autism and resilience’. The journalist made incredulous noises about how this was impossible and sidled off. Needless to say, there was no Jeanette article in the paper the next day!

The reason I spoke about Autism and resilience for TEDx Canberra was mostly due to a young man I met a while back. This man was 21 and had a diagnosis of Asperger Syndrome. He was evidently highly intelligent and perceptive but had finished school at age 15 because he ‘didn’t like it’. Fair enough, but he had no intention of completing his studies. He spent his days in his bedroom at his parents’ house, playing computer games. He had never driven a car or ridden the bus, so by a process of deduction, he had obviously been driven everywhere by family members. He seemed to think that employment was something that happened to other people and that he would never get a job. He was a lovely, thoughtful man but I worried that he would never gain an education or join the workforce and that this would be a huge waste of talent for the world, not to mention having a significant impact on the young man himself.

I thought about this man a lot  over the coming months and contrasted his teenage experience to my own. I had no diagnosis until I was twenty and indeed, none existed before then. Consequently there was no learning support, teachers’ aides or specialist Autism programs at school. I was bullied, I was miserable and no-one helped. I was told by teachers that ‘bullying strengthens character’. I somehow finished school with a very high score for Year 12 but the  whole experience left me damaged and filled with self-hatred. As an adult, I longed to have had an Autism diagnoses earlier then I did. But when I looked at the young man who had become ‘disabled’ by apparently having been shielded from most challenges, I could see that maybe it wasn’t as clear cut as that.

I said in my talk for TEDx Canberra that we need to diagnose kids early but that parents and schools need to build in some controlled minor ‘difficulties’ or challenges to help them build resilience, confidence and mastery. Here’s the TEDx talk if you want to watch it:

I think we need to approach a diagnosis in a young child as a first step to putting them on the path of building their confidence and resilience. So we don’t want people to have my experience where they get no help and end up hating themselves and we don’t really want the situation the young man I mentioned had where he seemed to have been shielded from everything remotely difficult and as such  will have struggles engaging in the world. We want awareness of Autism and its challenges with a good dollop of resilience and mastery thrown in. There, that’s probably what I should have said to the journalist…

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Jeanette at TEDx Canberra 2103