Wednesday, April 27, 2011

Speaking for Autism

One of the criticisms that has been leveled at the recent PBS Autism Now program is that it did not include an interview with a person who has autism.  While I somewhat understand and partially agree with the complaint, I don't think that the absence hurt the show that much.

To its credit, the show did have 4 children and one young adult with autism on the show.  The children were of different severities and not the just the extremely high functioning children that are typical on these types of shows.  The young adult also appeared to be moderate functioning and wasn't extremely disabled or enabled by his autism.

The children and young adult on the show did get a decent amount of camera time and the show did go to great lengths to demonstrate that people with autism function at all different levels.  They showed how some of the children can talk, others can kinda talk, and still others have almost no verbal communication and everyone had social issues.

Of course, the third part of the autism - the so-called repetitive and restricted interests - was barely touched.  Which is a shame because it is this part of autism that causes the majority of the problems.  Or at least it is in many "typical" children with autism.

Regardless, I think the point of the program was to show the middle of the spectrum.  There have been (many) programs that highlight the extremely high functioning but almost none that have looked at what the middle of the spectrum looks like.  Although for that matter, I don't think there have been any that give a serious look at what the extremely low end of the spectrum looks like either.

The show also appeared to focus of the majority of the autism population.  It seems to be commonly forgotten that the vast majority of all diagnosed autism cases are in children under the age of 21.

So when you put these ideas together the question is then who the show should have interviewed.

You would eliminate the extremely high functioning children and adults as they make up less than 10% of the autism population (and they already do more than 90% of the talking for people on the spectrum).  An added problem is that they are not very representative of the challenges faced by those who are in the middle (or lower) end of the spectrum.

You would eliminate older moderate adults because they weren't the focus (sorry, Jonathan) and because they are another minority in the overall population.

You would have to eliminate almost every lower functioning person - young and old - because they would likely not have enough communication skills or social skills to make the interview possible.  I might be wrong about the older people in this group but again, older people weren't the focus.

All of this is to say that the show would have likely wanted to interview young adults or children with either moderate autism or moderate pdd-nos.  They are the middle of the spectrum, the middle of the autism population, and what most people could be expected to be exposed to.  They would also have issues similar to those faced by many of the families whose children are on the spectrum.

But that lead me to a question that I don't know the answer to - how many of the children and young adults in this group have the functional communication skills and social skills that would be required for the interview?  Remember, when you are talking about classic autism or pdd-now, then you are talking about a condition that disrupts the functional use of language in addition to the social use of language.

That point bears repeating because I think it gets overlooked frequently.  All children with classical autism start out with a disruption in functional communication.  I would guess that most children with pdd-nos also have a disruption in functional communication.  If they didn't, they would more likely have a label of Asperger's rather than pdd-nos.

It is a assumption (right or wrong) that most children on the spectrum will be able to learn these missing skills as they get older.  But how old do these children have to be before they could be expected to have the functional use of language and the social skills that would be required for the interview?

I have never been able to find any solid numbers in this area.  Although, to be honest, since two of my daughters are only partially verbal I haven't really wanted to know what the numbers look like.

A page on the CDC's site suggests that 40% of children with all forms of autism do not talk at all.  The recent data on wandering in autism suggests that at least 30% of children with autism can't communicate well enough to answer basic questions like "what is your name".

So if an estimated 35% (estimated) of the "bottom" of the spectrum can't really speak, how high on the spectrum do you have to go to find a child who can not only talk but also has the social skills required for the interview?  How high do you have to go before you would be able to find someone who is able to express abstract ideas about how autism effects their life?

Of course, as the saying goes, if you have seen one person with autism then you have seen one person with autism.  There is a huge variety in the impairments seen in people with autism.  It is entirely possible that there are plenty of of young adults in the middle of the spectrum that have both the communication skills and social skills for an interview like this.

Although it has been my experience that for every area with less impairment there are an equal number of areas with a higher degree of impairment.  So there might well be many children with the communication and social skills with much more severe behaviors that would prevent the interview.

I don't have any of the answers to these questions but I thought it was interesting to consider.  So let me ask you.  Do you think it would be easy to find a child or young adult with moderate autism who would be able to speak for the middle of the spectrum?


  1. I would contest your construction of a what seems to be only a 1 or 2 dimensional autism spectrum -- I think the truth is actually more complex.

    I know of two blogging, non-verbal autistics (not including Amanda Baggs) whom would in the right circumstances make good interviewees -- Tithan Ara and KOR (Emma).

    And personally I think people like me and Mitchell should be included as examples of intelligent, verbal autistics that are truly, royally screwed by autism...

  2. I am not sure where your statistic of extremely high functioning autistics being less than 10% comes from or what your definition of "extremely high functioning is". It seems that part of the reason for huge increases in prevalence numbers is the fact there is so much more increased awareness of higher functioning autistics (including asperger's) whereas the moderate to severe end of the spectrum has likely been more stable.

    To answer your question at the end of the post, yes you can. Larry Bissonnette (sp?) in Wretches and Jabberers is one example of this. Sue Rubin from Autism is a world is another example.

  3. Socrates,

    You are certainly right in that autism is not just one or two dimensional. There are many different parts to autism but it is difficult to frame an argument that encompasses all of the dimensions at once. So I was just focusing on the communication and social aspects.

    And I would love to see a show were people like you and Jonathan were interviewed, it would definitely be worth watching. I just don't think that was the focus of this show.

  4. Jonathan,

    There aren't too many large breakouts of how the spectrum is distributed. But, I did find these two - - that seemed to agree with each other that seems to show that -

    Classic autism ~ 35%
    PDD-NOS ~ 52%
    Aspergers ~ 12%
    Other forms ~ 1%

    I would assume that a large part of the Aspergers group would be "high-function", some of the pdd-nos crowd, and a few in the classic autism group. So I guessed and rounded to about 10% or so. I could easily be way off.

    And, in the same post, I addressed the idea that the increase is coming from the higher functioning groups. There isn't much good data (again) but my opinion is that the increase is coming across the board. The data set in that post certainly shows that and the most recent survey from the CDC showed the same thing as well. There are other hints here and there in published research as well. And of course there are the anecdotal reports of what is going on in schools across the country.

  5. Well I know what the figures from the California DDS (which due to economic reasons are no longer compiled)said about the prevalence of autistics without retardation increasing and the percentage being lower in the 2004 california report. Of course the fact that people are coming into the DDS at earlier ages and their intelligence may not be as easily testable may be a factor in that figure as well.

  6. I always thought that they stopped compiling the California DDS numbers to prevent people from using them to show the increase in autism...

    I don't know whether the presence or absence of ID really shows an increase in "higher" functioning cases. On one hand having ID implies a lower level of functioning and on the other you aren't going to have ID if you are "higher" function. But does simply not having it mean that you are high functioning?

    None of my children have ID (as best as we can tell) but there is a definite difference in functioning levels. The twins are moderate while the youngest is shaping up to be high functioning.

    In their case, ID isn't a determining factor but I don't know whether that same idea would extend to other people on the spectrum or not.

  7. I think time constraints were a huge consideration too. I think to really do it justice you would probably need an epic style piece that goes at least two - four hours long (at the very least). But as far as television goes, PBS did a great first step.

  8. MJ,

    Your last comment raises a point worth pursuing...