Sunday, 7 August 2011

Five Things We'd Like People to Know About Adults on the Spectrum

Paula Jessop, a Kiwi aspie and friend of mine, was preparing a presentation on ‘Adults with ASD’ recently, and asked us aspies on Facebook, what were ‘The Top Five Things We Want People to Know About Adults on the Spectrum’. The resulting discussion set me off thinking, and I’ve formulated my own list - with contributions from Gabrielle Hogg, Karleigh-Jayne Jones, Rebecca Lumsden, and Leith McMurray.

Anyway, here’s my five things :-

1) That we are human beings first and foremost. We have wishes and dreams, hopes and ambitions, experience love and anger and happiness, the same as NTs do. We may experience them differently, or have different dreams, but the similarities are often stronger than the differences. Sometimes it’s too easy to perceive our behaviour solely through the distorting lens of ‘they’ve got this Condition’. As Rebecca puts it – “Not ALL our behaviour is autistic, sometimes I’m just having a bad freaking day.”

2) If you’ve met one person with autism, you’ve met one person with autism.Every person with autism is an individual, our autism is expressed differently for each of us.” (Rebecca) Autistics are not all maths geniuses (I’m certainly not!), computer nerds, train-spotters, and/or lovers of fantasy/science-fiction. Nor are we all (or even mainly!) recluses and obvious ‘oddballs’, social rejects with no sense of humour and a lack of personal hygiene. Many hold down jobs, or are married and/or raising children. Some of us have become very good at concealing our autism to ‘fit in’ (it’s still there underneath of course). And some of us are female. As Gabrielle points out, “ASD looks different in women.” A stereotype is just that – a stereotype.

3) Autism is a Developmental Disorder. Our development is delayed, meaning that we often can’t do things at the 'normal' age, but this doesn't mean we will never be able to do it. It might just take us a whole lot longer. “Adults with ASD still may need help in independent living skills… [and some] may need help with communication issues… having a communication device may help them to become more independent!” (Gabrielle) Nonetheless, we are capable of much more than people think. “Don't underestimate us cause with the right support, we can do awesome things.” (Karleigh-Jayne)

4) Many of us have other, ‘co-morbid’ conditions as well. (Gabrielle)This of course complicates the individual picture! These ‘co-morbids’ can include any or several of the following:-
Dyslexia, dyscalculia, dysgraphia, dyspraxia, hyperlexia; ADD/ADHD, sensory processing disorder, auditory processing disorder, prosopagnosia, executive dysfunction, communication difficulties; bipolar syndrome, depression, anxiety disorders, social avoidance disorders, alexithymia.
All these also occur without autism, but there is a high correlation. Most we are born with, but some are acquired through living in a world we find confusing, overwhelming, discouraging and unaccepting, eg depression. But never assume that a difficulty you have with an autistic person is due solely to the autism – it may be because of the ‘co-morbid/s’. Sensory issues especially “can make life hell!” (Gabrielle) Autism can also occur with unrelated conditions – I have heard of autistics who are blind, deaf, Downs Syndrome or physically disabled.

5) Autism means a different ‘mindset’. We act differently because we think, react, and feel differently to NTs. This different mindset is ‘hardwired’ into us, and can mean -
i) A focus on things rather than people, especially our ‘special interests’.
ii) An often extreme perfectionism, and rigidity of routines - “Please don't make plans and change or complicate them at the last minute! Make sure that your aspie friend knows exactly what to expect at an event/appointment etc.” (Leith).
iii) A lack of any instinctive ability to ‘read’ other people, which can make us appear ‘rude’ or ‘arrogant’. “Bluntness in speech may cause offence, this is not malicious… It is quite ok to point this out to an aspie (politely) and suggest it be re-phrased or recognised and apologised for… Emotion neutral is the way to raise problems with an aspie.” (Leith)
iv) Social difficulties and sensory overload means we can get overwhelmed easily, which leads to shutdowns or meltdowns. This is often beyond our control, so, as Leith points out, “Quiet and patience are the only tools to use, and it may take a couple of days for us to fully recover!”

And above all, remember – “We may not appear stressed, but interacting with NTs is way more stressful than they might imagine.” (Leith) A spoonful of simple kindness goes a long way.

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