“High Functioning” Autism: A New Battleground?

Published on May 26, 2009 by Jennifer Laviano

As an attorney representing children with special education needs in Connecticut, I remember all too well the climate we faced over a decade ago, when the “first wave” of parents of children with autism were starting to challenge the appropriateness of the programs offered by their school districts.

Back then, merely getting districts to acknowledge that a child HAD autism, let alone understand what it was, was a fight.

Over the last decade, we have made a great deal of progress in getting our public schools to acknowledge the particular needs of children with autism.  Unfortunately, it is rare now to hear a special education director state that they have never had to educate a child with autism before. We went from “what is autism?” to “how do we know he really has autism?” to “he might have autism but he’s only 3 and he really can’t tolerate a full day of services” to “he might need a full day of services but not ABA…we don’t want to turn him into a robot,” to “we agree he needs ABA but we have our own consultant.”

Therefore, whether by choice or by necessity, districts have been forced to consider programming options for kids with autism spectrum disorders.

Just when I thought we were getting close to an understanding, a new frontier has emerged:  special education services for kids with “high functioning autism.”  I am not entirely sure what “high functioning autism” is from a clinical perspective; I was an English Major who decided to go to law school, and later to represent parents in special education cases.  However, the clients who I typically see described as falling into the category of “HFA” are generally kids who are cognitively capable (at least as measured by standard assessments) and who continue to demonstrate significant deficits in pragmatic language and social skills, and also children diagnosed with Asperger’s Disorder.

These are the kids who might be at or above “grade level,” but who are unable to create or sustain appropriate relationships with peers.

I am very much opposed to creating a hierarchy of need, whereby certain children with certain disabilities are supposed to get higher priority than others.   No child is more important than another, although some cases are more urgent than others.  So please do not interpret what I am about to say as suggesting that we should ignore the needs of kids with more significant needs, whether on the autism spectrum or not.

Yet, kids who have been diagnosed with either Asperger’s Disorder or are considered as having “HFA” are being routinely under-served by our public schools.

School districts have finally accepted autism in its “traditional” presentation (if that even exists), but they are both resistant to, and therefore ill-equipped for, programming for kids whose autism is more subtle.  I am finding that districts are not just opposing the kinds of specially designed supports necessary to allow these kids to benefit from and interact within their public school environments, but that merely continuing eligibility under the IDEA has become a challenge.  Heaven forbid you ask for 1:1 paraprofessional support to facilitate social interactions between a child with HFA and their peers…what I see are school staff gasping at some requests and responding with things like “but he isn’t non-verbal” or “we don’t see any behaviors that would justify a para.”  When parents express concern about the program, special education administrators hear “more services” instead of “different” services.

What I find so frustrating about this new area of dispute is that so many of these kids have a real chance at a successful future, if only the school districts would do it right.

When will schools realize that their “penny wise” approach is so very “pound foolish”?  I certainly hope that it won’t take another ten years.

11 Responses to “High Functioning” Autism: A New Battleground?

  1. Kelly Brown
    June 12th, 2009 | 6:42 pm

    Hi, interest post. I’ll write you later about few questions!

  2. Tahirih Bushey
    September 27th, 2009 | 11:44 am

    There is an awkward dance forward in special education where first we don’t plan to move at all, then we are shoved forward, then we start to dance but we don’t know the steps–and that is about where we are right now in my part of the country with providing services to “High Functioning” children with autism. Social workers are often assigned to do “Social Skills Groups” and I am unconvinced that these are effective in the way that parents and schools hope. I am not convinced that low paid, poorly trained classroom assistants are the answer either. I am hopeful, though because these things are a start. We have decided to dance. Now, we all need to learn the steps.

  3. L Jones
    October 5th, 2009 | 8:32 pm

    In the NYC public schools there is a progarm that addresses the needs of high functioning ASD and Aspergers children.The program is called the ASD Nest Progream…and the program WORKS! Our children receive SDI(a social skills program) along with SLP, OT all while being in micro inclusion general education(one general ed taecher, one special ed teacher) classes with TYPICAL peers!There’s so much more to the program so see the following links:
    1. http://wliwcelebration.org/blog/edblog/the-asd-nest-program-a-public-school-inclusion-program-for-higher-functioning-children-with-autism-spectrum-disorders/992/
    2. http://www.uft.org/news/teacher/perspective/pilot_doe_autism_program/
    3. http://www.examiner.com/x-949-NY-Schools-Examiner~y2008m12d2-Best-autism-special-education-program-in-NYC-public-schools

  4. fakeautismepidemic
    August 3rd, 2010 | 11:28 am

    The reason many are being “underserved” is because many of the kids being diagnosed with autism aren’t TRULY autistic. Most every single child diagnosed with autism today seems to be “HF” high functioning or has “mild autism”. In fact, most these kids have ODD, OCD, mild schizoid issues, ADHD, fetal alcohol syndrome, bi-polar issues, or somem other disorder that was mistaken for autism or aspergers. Then you’ve got all these “weird” kids who have spent 590 hours a week playing strange video games getting a dark personality that can’t handle reality and suddenly, woe…they must be aspergers. Wake up folks ok, your ignorance and lack of discernment is pathetic. Talk about groupthink hysteria. LOOK closely at the kids. They aren’t autistic. Damn it wake up. You’re hurting the truly autistic population with your bogus diagnostic evals. You professionals need a professional eval yourselves. As in think harder and quit running around patting yourselves on the back like you’re cashing in on this big epidemic now and you’re going to be another savior for the HF population that isn’t even autistic half the time. God it is all soooo pathetic.

  5. Jennifer Laviano
    August 3rd, 2010 | 5:47 pm

    Wow. I approved your comment because I believe in open dialogue, even with people with whom I disagree vehemently. I would love to know what credentials you have to be able to discern yourself among these different diagnoses, especially in such a blanket fashion. Please do share.

  6. Perseveration Nation
    August 3rd, 2010 | 6:49 pm

    In the last ten years, and multitudes of students I have worked with, I have yet to see a “fake autistic” or child diagnosed as HFA/Aspergers who genuinely had been misdiagnosed (including my own HFA son). Above mentioned potential other disability labels carry very distinct symptoms that although some may overlap, are all very different conditions, that would be very difficult to misinterpret. “Fakeautismepidimic” if you had actual credentials, experience, or observation skills, you would understand how ridiculous your above comment/protest actually is. Autism is a spectrum, as is almost any condition/disease/situation. Your attitude, and narrow mindedness is certainly a far worse detriment to the “truly autistic” you speak of then the misdiagnosis you allege.

  7. Rochelle
    August 3rd, 2010 | 8:40 pm

    Dear Fake,
    I’ve not been diagnosed with ODD, OCD, any level of ‘Schizoid issues’, ADHD, bi-polar disorder, depression, paranoia or any other mental illness. My mother didn’t drink, so fetal alcohol Syndrome isn’t a possibility. I rarely drink at all, let alone while pregnant, so my children’s autism isn’t due to any of the excuses you list.
    If you think of autism as having allergies to certain stimuli, it might help. A person who is ‘high-functioning’, isn’t as metahorically allergic to as many things, but the medical need is still there. It doesn’t make sense to continually expose someone to something detrimental to their well being and ability to funtion; yet that’s exactly what society expects with autism.
    I’m truly sorry you’ve been hurt as badly as you have. No person should be made to feel so dehumanized they give up on humanity itself.

  8. Emily Willingham
    August 3rd, 2010 | 10:35 pm

    @fakeautismepidemic

    You probably are a troll who spends 590 hours every 24.583 weeks trolling to stir shit up, but…here are some issues with your comments.

    1. The week has 168 hours. Do you live on Jupiter?

    2. You say, “The reason many are being ‘underserved’ is because many of the kids being diagnosed with autism aren’t TRULY autistic. Most every single child diagnosed with autism today seems to be ‘HF’ high functioning or has ‘mild autism’.” Do you have reference(s) to support this assertion? Otherwise, it’s garbage.

    3. “In fact, most these kids have ODD, OCD, mild schizoid issues, ADHD, fetal alcohol syndrome, bi-polar issues, or somem other disorder that was mistaken for autism or aspergers.” There are clear criteria for identifying these various disorders. One of my sons has OCD, ADHD, *and* Aspergers. These disorders can be distinguished and can exist as co-morbidities. Again, do you have any citations to support this assertion? You appear to know very little about the diagnostics involved here.

    4. “When you’ve got all these ‘weird’ kids who have spent 590 hours a week playing strange video games getting a dark personality that can’t handle reality and suddenly, woe…they must be aspergers.” As you probably do not know, given your ignorance of all things neuropsychologically/developmentally related, “weird” is one thing, impairment of quality of life to a significant extent is another. As you appear not to know, the average age of an autism diagnosis is considerably less than the time that would be required for a child to play anything “590 hours a week” and develop a “dark personality.” I’ve already pointed out your math issues. Aspergers isn’t a diagnosis that a diagnostician just hands out. There are many posts available on the interwebz from people who have undergone the extensive diagnostic process or whose children have. Consider reading them so that you might actually know some of what you’re talking about. Or…you could just sit in your troll cave on Jupiter and continue posting crap.

    (5) “Wake up folks ok, your ignorance and lack of discernment is pathetic. Talk about groupthink hysteria. LOOK closely at the kids. They aren’t autistic. Damn it wake up. You’re hurting the truly autistic population with your bogus diagnostic evals.” I’m not entirely sure who your audience is here, whom you’re addressing. I’d first be interested in (a) what you think a “truly autistic” person is, and (b) how they’d be hurt by “bogus diagnostic evals,” whatever that means.

    (6) “You professionals need a professional eval yourselves. As in think harder and quit running around patting yourselves on the back like you’re cashing in on this big epidemic now and you’re going to be another savior for the HF population that isn’t even autistic half the time. God it is all soooo pathetic.” You appear to be very comfortable diagnosing large populations of people whom you’ve never met while accusing others of misdiagnosing individuals whom they’ve evaluated. Again, a nice example of how little you understand about the diagnostic process. Back to math…how does one go around being autistic “half the time” and (presumably) not autistic the other half?

    You find your vision of the world to be pathetic. I’d consider the source on that one.

  9. Joeymom
    August 3rd, 2010 | 11:06 pm

    I have a “high functioning” autistic child, and we have a very difficult getting his school personnel to understand his needs, much less to meet them- and when they are met, he functions extremely well, participating in the highest math and reading groups in mainstream classrooms.

    Yet he remains clearly autistic. We’re not faking his speech and communication issues, his social issues. When we go into public environments, most people mistake him for being mentally retarded because of his speech patterns and communication style, his inability to maintain a conversation, and his difficulties with fine and gross motor control and vestibular regulation. In order to access an appropriate curriculum, he requires support; such as visual communication (sign language has been a godsend), extra processing and response time (ask your question, then count to ten before you expect him to answer), and prompting for social interaction (using social stories, direct teaching of assumed social scripts such as ‘Hi, How are you?’ ‘I’m fine, thanks!’, and simple direct prompts such as ‘John is speaking to you, you need to respond.’)

    Yet we are often faced with resistance to providing him with an aide, with supports (especially sensory supports, which make a huge difference in his ability to cope in a regular classroom), or with needed services (such as occupational therapy)- because he’s “high functioning!” And getting funding for therapies and supports? Forget about it. He’s too “high functioning.”

    You show me one of these “misdiagnosed” kids, and I’ll line up a slew of “undiagnosed” and under-served kids. I have yet to meet a child actually diagnosed with autism by an appropriate physician (a neurologist, a developmental pediatrician, etc.) who doesn’t actually have it. Considering what we went through to get a diagnosis, I have no idea why you would think these kids are “faking it.”

  10. cjomes
    July 20th, 2012 | 7:21 pm

    believe it or not im the one who is high function autistic because i didn’t speak till the age of 5. so what do you mean HFA is a fake autism!what do you know about autism!?

  11. RollysMom
    September 13th, 2012 | 11:58 am

    I have a wonderful 11 year old son with HFA. He is gifted at mathematics, and works at grade level in his other classes. He could benefit from interventions like social skills, speech therapy, and OT. However, it is difficult to get his school to see past his grades. Another thing is that he bottles his anger instead of having tantrums at school.HFA children are very misunderstood-because they are exceptional and deficient all at the same time. For example, my son can ace a standardized math test, but tying shoe laces is a challenge. I wish schools would look at more than academics when addressing disability. Also, I wish that they would take a proactive approach with HFA students instead of waiting for them to fall apart.

Trackbacks/Pingbacks