Written by Claire Goodwin

In The News

Things I have learnt from people with autism

Today is World Autism Awareness Day. In her role as a speech and language therapist, Claire Goodwin has learnt a few things about people with autism that she’d like to share.

The word AUTISM spelled out in letter cubes.It’s World Autism Awareness Day. Autism. Like Rain Man, right?

I’ve been a speech and language therapist (SLT) for 10 years, and before that spent four years training to be one. As an SLT, I specialised in learning disability (sometimes labelled developmental disability) and autism spectrum condition (ASC), training carers, support workers, family members and colleagues about communication and autism, and communication and learning disability. If there’s one thing I’ve heard more than anything, it’s that autism is ‘like Rain Man’.

This is true in the same way that that all women are ‘like Ellen DeGeneres’. Yes, we can definitely draw similarities to Ellen, the woman that lives and breathes like the rest of us, but there are so many ways in which we are all different that it would be outlandish to group us all together as ‘Ellens’.

Yet we do this with ASC. In fact as soon as you mention autism, you can practically hear people’s brains muttering ‘K-mart’ and ‘water burns baby’ while counting cards and winning the jackpot.

So here are some of the things I have learnt about people with autism from people with autism and their families over the years:

Having autism doesn’t mean you have a learning disability

Autism is a spectral condition. It is not necessarily a case of mild to severe, because however ‘mild’ a presentation or cluster of presentations may seem to us, we cannot presume that the impact to the person with autism is mild. Of course, some people may have riskier behaviours or more significant learning needs and outwardly present as more ‘severe’ than others.

A learning disability is classed in three ways and all three must be present for diagnosis. A person must:

• present with an IQ of 70 or below
• have significant difficulties with adaptive functioning skills: washing, dressing, keeping him- or herself healthy and safe, problem-solving abilities
• all of these must be present from childhood.

A person with autism but without a learning disability would typically gain the label Asperger (rhymes with burger) Syndrome, and sometimes High Functioning Autism, although diagnostic labelling is changing.

Not everybody with autism is super-gifted at something

If we consider the abilities of people such as Kim Peek (the inspiration for Rain Man), Daniel Tammet, Stephen Wiltshire and Temple Grandin, we see people who are skilled in a way that is exceedingly difficult to acquire by learning. People like the above, who are savants in mathematics, languages, art and engineering, are rare. It is believed that savantism is higher in the population of people with ASC: according to the National Autistic Society (NAS), current estimates are that one to two in 200 people with autism have an extraordinary talent or savantism.

“What’s in a label, you might ask? The answer is tailored support, awareness
and understanding of self, and access to appropriate adjustments within work and social life.”

A trait of many people with autism is a narrow field of interest and the effects of these are often misconstrued as savantism. For example, I had the pleasure of working with a fantastic woman some years ago who loved the TV show Red Dwarf. She’d memorised every script, every pause, every caption, every fleck of intonation, every sound of the spaceship. She was able to recite these scripts, all 61 of them, exactly as they played out on the show, word for word, sound for sound. She didn’t need any physical cues or prompt sheets and could do the same with Thomas the Tank Engine, whose back catalogue is much more extensive. She was able to absorb herself in the material, with disregard for many other things, in order to learn it.

Autism is gender-neutral

NAS statistics in the UK show that the prevalence of autism is around 700,000 or just over one in 100 people. These numbers have been steadily rising, most likely due to an increase in better identification and diagnostic services.

Most statistics around the world will show a gender bias towards prevalence in males over females, with between one in five and one in three being reported in the female to male ratio. However, research shows that this may not be a fair representation. It seems our identification and diagnostic services are struggling to identify females with ASC due to a difference in presentation of the traditional ‘autistic traits’ and how they manifest in a girl or woman’s behaviours and social constructs.

Autism in Pink (not sure what I think of this title) is a recent development in exploring this area and moving things on for identification and diagnostics in females. I’ve seen many older females in the community supported under the label ‘learning disability’ when there is clearly an undiagnosed presentation for that person. What’s in a label, you might ask? The answer is tailored support, awareness and understanding of self, and access to appropriate adjustments within work and social life.

Everyone with autism is different

Like with any other physical or mental health condition, autism is not a person’s defining factor. A person with autism might need some support to understand social circumstances; they might struggle with sensory input or have routines that they need to keep to, and these traits might be quite similar to other people with autism.

But, like everyone else, people with autism all have different personalities and influences that define them as a person and shape their individuality and personality. People with autism can:

• make great friends, colleagues and family members
• be fixated on one thing
• be funny, warm and caring
• have a range of interests and things they like to do
• be boring, irritating and not your cup of tea

The above points are neither mutually exclusive nor all prevailing. It is important to remember that people with autism are themselves before anything else.

For more info:

http://www.autism.org.uk

http://www.autismresearchcentre.com

http://www.stephenwiltshire.co.uk

http://www.templegrandin.com

http://danieltammet.net/about.php

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Written by Claire Goodwin

Claire is a speech therapist, baker, cake decorator, sometime radio guest and writer. She writes about food, being fat and living with mental health problems @bake_therapist; www.baketherapy.co.uk; www.facebook.com/CakeChemistryUK