When Lucas was young, I thought he had high-functioning autism because he was included in typical
toddler preschool classes, and was warm and cuddly with me.
But now most would consider Lucas low functioning.
Here's the thing, after two decades in the autism world, I really don't like the terms
"high functioning" and "low functioning".
So today I'm going to get on my soapbox about these terms, and tell you how to tell if it
matters, and what to do about high-functioning versus low-functioning autism.
Hi.
I'm Dr. Mary Barbera, autism mom, board certified behavior analyst, bestselling author, and
online course creator.
Each week I provide you with some of my ideas about turning autism around.
If you haven't subscribed to my YouTube channel, you can do that now.
As I said, when Lucas was really young I didn't think he had autism at all, and I was sure
that if he was diagnosed with autism, it would be very mild autism.
That kept me in denial for over a year, which was a very bad thing.
I did do a video blog on denial many months ago, so you may want to check that out now.
Even after Lucas was diagnosed with autism, with moderate to severe autism, one day before
his 3rd birthday, I still considered him to be high functioning because he was going to
typical preschool with a shadow, he wasn't having many problem behaviors, or self stim
behaviors.
Then as Lucas got older, when he was about six or seven years old, I thought he was kind
of in the middle of the spectrum but definitely not low functioning.
That was until one day when I went to look at an approved private ABA school for Lucas.
This is where I saw a little boy, I'll call him "Nathan" who ... I didn't know his name.
It was circle time at this ABA school.
There was a boy sitting there.
He flopped on the ground in the middle of story time, and was throwing a tantrum.
I wasn't a behavior analyst at this point, so I was just kind of looking on, and thinking.
Lucas was used to going typical preschool.
He was enrolled in our public school kindergarten program with a shadow, with a special education
teacher.
He was still doing a home program for half the day.
So in my mind, even though he had moderate to severe autism, and wasn't conversational,
I thought this boy was much lower functioning, and I was kind of like thinking, "That's it.
Lucas does not belong here.
I want him in typical, regular public school where he can get role modeling."
The director talked to me at the end of my short, one-hour visit, and she asked me if
I thought this was a good fit for Lucas.
I told her that I thought Lucas was higher functioning than the kids I saw there.
She told me that Nathan, who had flopped to the ground during story time, was actually
reading almost at grade level, and had much more language than Lucas did.
At that point I had an aha moment, and I really realized that it wasn't fair to call Lucas
high functioning or low functioning, or to call this boy Nathan, high functioning or
low functioning because within each child are their strengths and their needs.
Lucas blended into the community a lot better, blended into public school a lot better because
he didn't throw major tantrums or have problem behaviors to that extent.
He had language needs, and he had academic needs, and a bunch of other needs.
But in terms of taking him out into the community, taking him to a restaurant, to a pool, on
an airplane, those made look Lucas look a little bit more higher functioning than other
children who were more advanced in other different areas.
At this point I thought, "If you were a teacher, and you had six or eight kids with autism
in your classroom, and you were told to line them up in terms of who's the highest functioning
and who's lowest functioning, you would actually have a really hard time."
Because are we talking about problem behaviors?
Are we talking about going into the community?
Are we talking about academics, language?
Just a host of things that kids have issues with.
Some kids are more mild-mannered like Lucas, and blend in more while other kids have high
problem behaviors and those sorts of things.
So within each child are their strengths and needs.
At this point I realized it was impossible to really tell if a child had high-functioning
or low-functioning autism, especially as they were younger.
Over the years I've really realized that a lot of parents want to know that their two-year-old
or even say their two-year-old, "Oh, my two-year-old just has high-functioning autism," or "You
can't tell how a two-year-old is going to be at eight or 18."
The biggest thing I've learned over the years is you need to treat early autism like the
worst case of autism you've ever seen in order to give your child or your client the best
outcome possible.
I did do another video blog a few months ago on, can you predict how a two-year-old's going
to be at age eight, and so you might want to check that out.
But over the years this high functioning, low functioning has really been a blurry line
for me, and when people say, "Oh, my son just has high-functioning autism or just has Asperger's,"
I think that's really a disservice to the child.
And I think for other moms whose kids are more impaired, it's kind of like comparing
cancer.
Like you may have a better prognosis having thyroid cancer than pancreatic cancer, but
cancer is still life altering, and you never know how everyone and how you are going to
do.
I think the whole high functioning, low functioning gets even more complicated.
In general, when people say kids have high functioning autism, they tend to mean that
the child has full language, are conversational.
Many times these high functioning kids can be included in general education settings,
and may be high enough functioning to learn how to drive, go to college, perhaps get married.
But with high-functioning autism also comes some co-morbid conditions like anxiety at
a higher rate, and depression, and those sorts of things.
So it comes with additional stress at many times.
Low functioning, many people when they use that term tend to think of kids that also
have intellectual disability in addition to their autism.
They might have little to no communication or language, they're less likely to be fully
included, and now the DSM-5, which gives a diagnosis criteria for autism, has three levels
of ASD.
Level 1 is more mild autism, higher functioning, and Level 3 would be kids like Lucas who need
very substantial support.
But over time these levels could change.
You could start out as a Level 3, and with the right therapy, you could move into Level
1.
I've seen this many times with my own eyes.
But obviously there's a whole spectrum in between going to college, and driving a car,
and being completely in need of constant support and supervision.
Some high-functioning kids are fully conversational, but they can't hold a job due to that anxiety
or depression, while there's some low-functioning kids who grow up and are gainfully employed
and happy, living with only some minor support.
In the end, it doesn't matter if you call someone "high functioning" or "low functioning".
It's about each child or adult with autism reaching their fullest potential, and using
their strengths to bring up their weaknesses, improving those deficits, and helping each
child be as safe, as independent, and as happy as possible, reaching their fullest potential
always.
When kids are really young, maybe not diagnosed with autism or newly diagnosed, it's impossible
to tell how they are going to do long term.
So as I said earlier, it's best to treat autism aggressively even if you think it's very mild.
Wherever you're watching this video blog, I would love it if you would leave me a comment,
give me a thumbs up, and share this video with others who might benefit.
To learn more you can go to marybarbera.com/workshops for a free workshop to help you get started
turning autism around.
I'll see you right here next week.