Autism and Vulnerability

One important point that Marc made was the differences between the shared world and the autistic person’s own world. The shared world contains social complexities, threats, unpredictability, a dependence on others to make decisions, and misunderstandings and dishonesty. An autistic person’s own world is simpler, safe, clear and predictable, independent, they have a high level of competence in it, and what you see is what it is. One quote I particularly liked from Marc’s presentation was, “The life of an autistic child in a neurotypical environment is an ongoing exercise in trying to keep the balance.” It is a challenge moving between the shared world and one’s own world.

Vulnerability occurs because of our overestimation of a person with autism understanding language, social situations, emotions, organization and theory of mind. We overestimate problem solving skills and underestimate sensory difficulties, anxieties, and the effort required to understand the environment. People with autism are often rigid in their thinking due to a lack of understanding. They are limited in their ability to adapt in a variety of situations. There is often a learned dependency from years of therapy or having an aide at school or in the community. There is difficulty in the medical community to diagnose physical problems, mood disorders, psychosis and anxiety disorders. All of these factors make people on the autism spectrum vulnerable.

At the end of Marc’s talk, we had a 43 year adult with Asperger Syndrome (AS) speak for an hour. David’s story was a sad and disturbing one. He was only diagnosed at age 29 after years of struggle in school and the community. He was told he had a severe learning disability before he was diagnosed with AS. David had not listened to Marc’s talk yet he spoke of the difficulties being in the shared world. David’s mother moved away and left him with no parental support. He has a key worker that sees him an hour every day, but this is not enough support. David has no job and struggles with mental health issues. He has obsessive compulsive disorder and must perform a series of rituals when he is walking somewhere. These rituals look strange and are not understood by onlookers. This behavior isolates him.

David frequents pubs, drinks, then gets into fights. He never throws a punch but provokes others to start fighting with him. He is enmeshed in this pattern, more than likely because of a need for predicatability. He is well known by police officers and has spent nights in jail or in the hospital from injuries. David has a permanent scar on his forehead from banging his head on the wall in moments of frustration.

What is upsetting about David’s situation is he is clearly an intelligent man. He speaks well and is a deep thinker. One can see how much potential he has. He was a confident speaker at the conference. All of us were concerned for him. He is man that has fallen through the cracks because his IQ is over 70 and therefore he doesn’t qualify for services; yet here is someone who is vulnerable. With the right supports, he could be successful. His future seems uncertain at the moment and there are only a handful of professionals who can advocate for him, but they are overloaded with clients too.

Then there is the flip side – John. I’ve blogged about John and spoken about him in my presentations. He is a success story because he has the support of his parents, a good job, and an excellent team of professionals who help him. John said to me, “Maureen, I would be like David without support.” Yes, John would. John is as vulnerable as David.  John is intelligent, witty, a great speaker and fun to be around. He has purpose and motivation in his life. David is lacking motivation and direction.

The topic of vulnerability needs to be discussed and considered when providing services. Just because a person seems able, does not mean they do not need support in keeping well both mentally and physically. It is ridiculous that any government should make the benchmark of having an IQ under 70 the criteria for granting services. It is often our most intelligent on the spectrum that are the most vulnerable. Intelligence and ability do not go hand in hand. We have to look at an individual’s strengths and weaknesses in order to determine the best course of action to help them be successful.

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  1. Chrissie Summerson-Wright says:

    I found this a very informative and interesting article. Having a brother 56  who was cosseted and protected by mum not allowing him to integrate for fear of ridicule and bullying. My sister and I who are older now have the huge responsibility of keeping him safe in an environment that will protect him now that mum is not here. Rehousing is a mammoth task but hopefully getting there with love, support, understanding and  knowing what we want for his future to be happy. When we are gone who will care for him the way we do? That’s why it’s important to get it right now

    • Thank you so much for sharing your family experience. We often think that keeping our children at home with us until we die is a good plan. Our children need the chance to live a life of their own. I have to convince my husband of this as he thinks the kids should always stay with us. There are good people and situations out there. We just have to find the right fit and people to provide support.

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