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
Is autism defined as an "incurable" disorder? How about all those stories of children "recovering" as a result of various therapies and medications? In this article, I explore the most recent discussion of a "cure" for autism, and the definition of a cure as described by one of the developers of the most recent criteria for describing autism.
Autism isn't the sort of biological disease you can "catch" -- but that doesn't mean it's impossible to acquire autism. Find out more about just how autism experts think about the known causes of autism.
Parents like to feel that their grown children are "taken care of" -- married, in a permanent job, and "settled" in a community. Of course, this expectation isn't always realistic: "empty nesters" often find their chicks coming home to roost for all sorts of reasons, ranging from unemployment to divorce to health concerns.
Parents of autistic adults seem to feel that a group home is a good way to see their children "taken care of," and many have the sense that once their adult child is living in a group situation the job of parenting is pretty much all done. I'm not sure that vision is realistic though: just like marriages and jobs, group home placements are only as permanent as the people who hold them together, fund them, and believe in them!
What are your experiences with group homes for autistic adults? Do you feel that they provide both parents and adults on the spectrum with a permanent solution? Do they offer an answer to the question "what happens after we, our child's parents, are gone?"
In the last few weeks, several school districts in our area have faced major budget shortfalls, and responded with layoffs of staff including administrators, aides, and even teachers. With the economy bouncing back (at least to some degree), the problem wasn't a general shortfall in income. It was the overwhelming cost of special education -- led by the huge price tag for out-of-district and therapeutic services for children with autism. Not surprisingly, once parents of typically developing children truly understood the cost of out-of-district and therapeutic services -- often tens of thousands per student -- they were quite upset, as were the laid off employees of the district.
I looked into the issue and was surprised to learn how much the burden of special education is carried by local districts. Yes, there are federal and state reimbursements, but the district must lay out the cash up front, and the reimbursements are only a percentage of the costs involved. For a district that chooses not to create its own autism support programs, such costs can quickly add up. What's more, the Individuals with Disabilities Education Act, while it has had a tremendously positive impact in many ways, can also make it very difficult to balance the needs of a child with autism with the reality of standardized testing and the best interests of typical children in the district.
Are autism services bankrupting your school district? Where do you stand on this important issues?
What does it take to enjoy parenthood with a child on the autism spectrum? For some people, it's easy. For many of us, however, autism can stand between us and the pleasure of being a mom or dad. Here are six tips for getting past the negative feelings to really connect with and enjoy parenting your child on the autism spectrum.
School districts, state agencies, federal agencies, and even private insurance all kick in to help support the costs of autism. Special education, therapies, vocational training and more are all available to most American families for free. Why, then, are there so many people spending tens of thousands a year out of pocket to pay costs associated with autism? There are a variety of reasons -- one of them may be yours!