What is Severe Autism & Why Helping Severe Autism in Children is Harder Than Ever

Many kids with severe autism have extreme difficulties, and both parents and professionals struggle with how to help kids with severe autism. Today I’m going to talk about three reasons why helping kids with severe autism is harder than ever.

Each week I provide you with some of my ideas about turning autism around, so if you haven’t subscribed to my YouTube channel, you can do that now and join the thousands who already have. Since I consider Lucas, my son, to have severe autism (and he also has a mild intellectual disability), I thought I would talk about the three reasons why helping kids on the severe end of the spectrum appears to be harder than ever.

Severe Autism Symptoms

First of all, what is severe autism? And unfortunately, I did not find any standard definition. The writing that I saw involves a couple of key points to categorize someone as on the severe end of the spectrum. Their language is usually very impaired, so either not speaking at all, or minimally verbal, not conversational and not able to fully express their wants and needs.  So that is a big part of being severely impacted. Their IQ score, if that’s been done, is usually lower than 70, which indicates what we used to call mental retardation and now we call intellectual disability.

Kids with severe autism have an inability to be independent with safety, staying alone in the house or out in the community and taking care of all their physical needs like toileting, showering, and dressing too. They would need some kind of supervision or assistance in those areas usually because of their ability or inability to communicate fully. A lot of times kids with severe autism also have problem behaviors and sometimes these can be major problem behaviors including aggression,  self injurious behavior, and property destruction. All of these things rolled into one presents really big challenges, especially as the child grows older.

Lucas could not stay at home alone because, while we could teach him to call 911, he doesn’t have the decision making ability or the cognitive ability to understand what strangers are and what to do in this situation or that situation.  We would be unable to teach him that. He is unable to be safely alone or safely out in the community and I would think that, that would be an indication of severe autism.

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Severe autism and developmental expectations

The first reason why I think it’s harder than ever to help children with severe autism, is because I think as kids grow up, the expectation is for them to not need babysitters, to not go to daycare for the summer, and to not need help with showering and toileting. If they have severe autism when they’re two, it’s different than if they have severe autism when they’re 12 because expectations for kids continue to get harder and harder.

It’s also harder to get care; and with our kids, if they are on the severe end of the spectrum, they are going to continue to need some kind of supervision and care. It’s really hard to get babysitters if you have problem behaviors, if you have toileting issues, and if you don’t have a child that can speak or shower independently. Some summer programs and camps are not able to accommodate kids if there’s any kind of major problem behaviors. Most mainstream settings are not going to be able to accommodate. So when they do continue to need help it takes a toll on parents. It takes a financial toll and usually emotional toll. It can cause marital strain and all sorts of other things. So as the child ages, if they don’t get more mild with their autism, it does usually cause issues.

Skewed perceptions and autism in the media

The second reason why I think it’s harder than ever is because there is a lack of research on kids on the severe end of the spectrum.  So their services, their rights, and their funding, are impacted.  The funding streams and the services are based on research on higher functioning individuals and so that’s an issue.

And the third reason is that media outlets tend to cover people with high functioning autism. They want positive stories. They want kids that are going to college. The Good Doctor is a show right now, and you know, that is a very, very small fraction of the people on the spectrum that could possibly go to med school and be a doctor. But that is what is featured. Because of this, it skews the general perception of autism.

People with high functioning autism are self advocates and they are out there lobbying and saying that kids shouldn’t be in group homes or kids shouldn’t be in sheltered workshops or adults with severe autism shouldn’t have guardianship over them. There’s no way my son could possibly be independent enough to not need a guardian. He can’t even cross the street by himself, let alone stay alone, manage his affairs and manage any kind of medical decisions. So of course he would need a guardian. But there’s this disparity between the two ends of the spectrum. There are reasons why kids with severe autism do not have enough advocacy for them.

Amy Lutz is a mom to a young adult with severe autism. Amy Lutz is an author and she’s going for her PhD at Penn. She was recently interviewed on my podcast on episode number 20. She is one of the board members of a new organization called the National Council for Severe Autism and they are lobbying for better treatment, better services, better research, better media coverage on our needs as parents of adults and kids with severe autism so that we can really advocate for them better. So if you’d like to listen to that podcast about severe autism, I would encourage you to do that at marybarbera.com/20.

I’d also encourage you to check out the National Council for Severe Autism, join their mailing list and start reading about the challenges associated with severe autism. For more information about my online course and community, I would love it if you would attend a free online autism workshop, and I’ll see you right here next week.

Want to get started on the right path and start making a difference for your child or client with autism?
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