If the term "high functioning autism" conjures up images of uber-successful individuals like Albert Einstein, Bill Gates, and Mozart, you're only aware of a tiny part of the story. Most people with Asperger syndrome and High Functioning Autism are not geniuses, nor are they successful businessmen, world-renowned artists, or major scientific achievers. Instead, they are individuals of more or less normal intelligence and ability who are also living with a range of mild to severe challenges that can make daily life extremely complicated and difficult. What makes high functioning autism so challenging? Here are a few answers to that important question.
If you're an adult on the spectrum, please do add your thoughts to this blog (it may take a little while for your comments to appear, as I need to approve comments before they are published!).
We have a son with autism. He's verbal, funny, gentle, and easy to have around the house. Because our son is neither aggressive nor self-abusive, is able to express himself, and is no danger to himself or others, we are in a privileged situation. The idea of living with Tom forever is not scary; in some ways it's actually reassuring.
I am very well aware that our lives are not typical of many families living with autism, who are very rightly afraid for their own safety and/or their child's. Many of you have experienced true physical emergencies when you feared for your safety or even your life. And many of you are looking toward the future with extreme anxiety as you wonder not only "what will he do when we are gone," but "how will we cope with him when we are no longer bigger and stronger than he is?"
While I have met families living with this situation and written about their stories, I have found it very difficult to find general information for families coping with an immediate crisis or long term physically dangerous situation. Some families are able to find services and supports, but so far I have not found generally actionable information to share. In some places, your choices seem to be limited to the police or a psychiatric ward, neither of which sound like good options for more than a few hours or days.
Have you ever been in an emergency situation with a teen or adult with severe autism -- afraid for your own and/or your child's safety? If so, what did you do, and what you recommend that others do to manage such a situation? Once the crisis was past, did you find services or supports to avert a re-occurence? Please share your thoughts and resources.
Whenever I hear or read of autism described as a disease, I feel uncomfortable. Surely "disease" isn't the right term to describe such a huge range of differences, challenges, symptoms and behaviors? Not only does the word "disease" make me think of the flu (about as different from autism as it could be!) but it is also a synonym for "illness." And there has been far too much conflation of autism and severe mental disorders which can cause hallucinations and delusions.
But then again, maybe autism is a disease. At least, there are good arguments to support that point of view.
In this article I look at both sides of the question -- Is Autism a Disease?
Children with autism are cared for by their parents, who have done a great job of developing support groups and organizations around their particular needs and concerns. But what about people with autism themselves? In recent years, many adults on the autism spectrum, with or without the help of other members of the autism community, have created their own support organizations. Find out more about what autism self-advocacy groups are all about. Might one be right for you or someone in your life?
More Resources for Adults with Autism