Many kids with autism, 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.
Hi, I'm doctor Mary Barbera, autism mom board certified behavior analyst and bestselling
author of the verbal behavior approach, how to teach children with autism and related
disorders.
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.
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 is appears to be harder than ever.
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.
First of all, their language is usually very impaired.
So either not speaking at all or minimally verbal, not conversational, not able to fully
express their wants and needs.
So that is a big part of being severely impacted.
Iq score if that's been done is usually lower than 70, which is indicate, indicates um,
mental, mental, what we used to call mental retardation.
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, dressing, um, 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 and self injurious behavior and property destruction.
Um, so all of these things rolled into one presents really big challenges, especially
as the child grows older.
Lucas could, could not stay at home alone because while we could teach him to call nine
one one he doesn't have the decision making ability or the cognitive ability to understand
what strangers are, 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.
So the three reason, reasons why I believe it's harder than ever to parent or provide
services to a kid with a severe autism is number one.
I think as kids grow up, the expectation is for them to not need babysitters, to not go
to daycare for the summer, to not need help with showering and toileting.
If they have severe autism when they’re two, it's different than with 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, there are going to continue
to need some kind of supervision and care.
And it's really hard to get babysitters if you have problem behaviors.
If you have toileting issues, if you don't have a child that can speak, uh, or shower
independently.
Some summer programs and camps they have, they're not able to accommodate kids.
And if there's any kind of major problem behaviors, most mainstream settings are not going to
be accommodating they’re not going to be able to accommodate.
Um, and so when they do continue to need help, it, it's a, it's a, it takes a toll on parents.
It takes a financial toll, usually emotional toll.
It can cause marital strain and all sorts of things.
So, um, as the child ages, if they don't get more mild with their autism, it can provide,
uh, it does usually cause issues.
That second reason why I think it's harder than ever is there is a lack of research on
kids on the severe end of the spectrum.
So their services, their rights, their funding, are impacted.
The funding streams, the services are based on research on higher functioning individuals.
And so that's an issue.
And the third reason is that media, um, outlets tend to cover people with high functioning
autism.
They want positive stories.
They want kids that are going to college.
And um, even the media, the good doctor is a show right now, um, 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 featured.
So 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, or adults with severe autism shouldn't have guardianship over them.
It's like there's no way my son could possibly be independent enough not to 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 are, there's not enough, um, advocacy for
them.
So Amy Lutz was, um, is a mom to a young adults on with severe autism.
Amy Lutz is a author.
She's going for her PhD at Penn.
Um, and 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, um, 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 forward slash 20.
I'd also encourage you to check out the national council for severe autism, join their mailing
list and get on a start reading about the challenges, uh, associated with severe autism.
And for more information about my online course and community, I would love it if you would
attend a free online workshop at marybarbera.com forward slash workshop I'll see you right
here next week.