Are Things Really Any Better?

For all that autism has a "higher profile" in the public eye and for all that more children are being diagnosed with an autism spectrum disorder (and more adults with a certain "computer geek obsessive weird interest" profile are said possibly to have Asperger's Syndrome)—for all that autism has become a "common, even fashionable condition," life for those "affected by it" is in no way easier. So Michael Fitzpatrick, a London GP and the father of 15-year-old James, contends in an article in the October 12th Times of London. He writes:

The higher profile of autism cannot be attributed to scientific advances. Though there have been impressive developments in our understanding of the genetics and psychological features of autism, neuroscience has yet to make much headway in elucidating the mediating links — or in suggesting therapeutic interventions. The increased awareness and wider diagnosis of autism appear to be largely the result of a cultural trend towards redefining human differences in terms of disorder. The question we now face, as James embarks on the transition to adult life, is: have things really improved for people with autism?


There can be no doubt that in many ways we have made progress. Parents are no longer blamed for making their children autistic through their frigid personalities, as they were as result of influential psychodynamic theories in the postwar decades. Behavioural and educational programmes have been developed for children at home and at school, though access to these remains uneven. And though there is much talk of provision for adults, including help with housing and employment, the reality remains one of a constant struggle for services.


I feel quite in agreement about this. There is plenty of talk and hand-wringing about the lack of services and programs, of employment and housing, for adults on the spectrum. There are committees and task forces and one does often hear stories of hope and success, such as a recent
Wired magazine article about Specialisterne (Danish for "Specialists"), a Danish IT company that hires many individuals on the spectrum; its owner, Thorkil Sonne, has an autistic son. And, as Fitzpatrick writes, there has been "progress" in that parents are no longer routinely blamed for causing their child to become autistic, and we seem to have a better understanding of how to teach autistic individuals.

But I have to tell you, our recent experience with Charlie's school situation in general and with our school district in particular has led Jim and me deeply to question the "progress" made in how parents of autistic children are perceived by "autism professionals," and, too, to think more than twice about some of the educational methods used to teach autistic children.


The public school autism program that Charlie has been in for the past 3+ years is regarded (here in New Jersey and in New York and elsewhere; word gets around) as a sort of "flagship" program, as a model for how a public school district can create an appropriate, and even "high quality," education for autistic children. This program not only uses ABA, but a
version of ABA that is very structured and "tight" (as in this private school and this one). The district's ABA consultant directs a graduate program at a local college that offers Master's degrees in ABA and is now going to offer a Ph.D. in ABA. Many of Charlie's teachers and aides are students in this program, with a view to providing a higher level of expertise to the students and immediately, without having to call on an ABA consultant.

So the fact that this program has offered one solution for Charlie's "behavior problems"—a helmet and restraints—has led us seriously to question this program, and to reaccess the training of its staff in teaching autistic children.  The fact that Jim and I—yeah, we have Ph.D.'s but with Charlie, we're "just" parents—were able to get rid of him wearing that helmet and to help him minimize any major "behaviors" or "tantrums" or "meltdowns" suggests to me that, while ABA can accomplish certain things, behaviorism isn't always how to address a child's "behavior problems." 

I used often to say that, had Charlie lived some 20 or 30 years ago, he would have been taken from us and placed in a residential facility at a young age, perhaps as young as seven. I was glad to note one sure sign of progress in the education of autistic children today, that there are teaching methods and treatments (medication, in Charlie's case) that can (again, in some cases) address some of the "autism nightmare without end" sort of behaviors. Not only have teaching methods become more humane, but our understanding of autistic individuals has expanded.

Yeah, I'm eating my words. 

When Charlie's teacher first mentioned that the school district—as advised by the autism consultant, I infer—needed to be placed in Bancroft Neurohealth's Lindens Behavioral Unit for a "temporary residential placement," and that this placement was the only way that Charlie's self-injurious behaviors could be eliminated, and that eliminating them was necessary if he were to have any sort of life with a job and in the community in the future—when I heard that, I burst into tears. (His teacher, as I recall her expression, seemed taken aback, but that is my impression.) I had most definitely heard of Bancroft. Charlie's teacher was in our living room on a home visit (such home visits are part of the autism program in the school district.) When, several months later in May of 2009, Bancroft was brought up again as what Charlie needed (at a time when he was wearing the helmet and the school staff was using restraints), I told his teacher that talking about such was a change in Charlie's placement and not the sort of the thing (legally) to bring up at a home "parent training" session, but at an IEP meeting. 

The school district informed us the next day that an IEP meeting was necessary. This meeting was cancelled the day before it was to happen when the Supervisor of Special Education called me saying that she had to go Ireland immediately as her grandmother had died. The meeting was held in July.

We've had a great deal of time to reflect on these events and the one thing I've realized is, I think I know how mothers in the 1960s felt when they were told they were the reason for their child being autistic, and that—to get the child better—the child had to be taken away from them, from their families. The words of the women in the 2002 documentary Refrigerator Mothers have been ringing through my head. I'm sure some will say that I'm over-reacting and over-reading. But the pain and suffering on those mothers' faces in the film—I feel that I know these now too well, and more from the inside out than ever. Charlei in the middle school parking lot

I feel practically nauseous when I see the helmet, off or on Charlie's head. That blue plastic thing may as well be a dunce cap. It's become a symbol to Jim and me of how little "progress" has indeed been made in acknowledging and respecting the dignity of individuals on the autism spectrum, of those with disabilities, cognitive, intellectual, physical. The school district insisting on the helmet takes us all—takes its autism program— right back to 1967, which is when Bruno Bettelheim's The Empty Fortress: Infantile Autism and the Birth of the Self was published. 

By putting the helmet on Charlie, and by consistently refusing to acknowledge how Jim and I, Charlie's parents, got it off him, our school district and those who run its autism program, reveal that they have walled themselves into a fortress of their own, one in which they're so withdrawn into their own principles and beliefs that they can't hear the voices, ideas, suggestions, or anything of anyone else. And not, I'm suspecting, of a certain young man I know. 

And. Because Jim and I know this young guy, we know our lives—even with everything I have said in this post—are better, that life is good and life is better and as good as it gets because we have our Charlie, and because we go with him.

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Comments
23 Responses to “Are Things Really Any Better?”
  1. emma says:

    Oh…. I just hope that Charlie’s new school will offer more, will have staff who are willing to listen and think outside the box…..

  2. autismvox says:

    Jim and I have been planning about what we’ll say to them, especially in regard to certain things (like how he transitions—his need for lots of time). I guess I sound like sour grapes in this post! But the past year has been more eye-opening than I would ever have thought.

  3. emma says:

    I wouldn’t call it sour grapes, in fact I think you have remained incredibly positive in the face of such…what word to use? Negativity……..

  4. Niksmom says:

    Yes, as Emma wrote, you have remained remarkably positive in the face of what I can only imagine has been a maelstrom of very un-happy emotions and experiences with the school’s inflexibility and methods.
    I hope and pray that Charlie’s new school will take the time to listen to you and Jim and to HEAR Charlie. I think he’s been communicating loud and clear for a long time.

  5. aenea says:

    It’s definitely not sour grapes…it’s justified outrage on behalf of Charlie.
    All that I can do is wish you luck with the new school, but you already know that you’ve got my support.

  6. farmwifetwo says:

    I find the more people think they know about autism, the less they truly do.
    My fav professionals are OT’s and SLP’s. I have never met one yet – and we’ve had many – that can’t think outside the “box”.
    Everyone else gets stuck in the “what autism is”.
    As for Fitzpatrick… I’ve read “Defeating Autism”… All I can say is I’m glad he’s not my Dr for my kids. He’s like our first Dev Ped… “They’ll amount to nothing, deal with it, get over it, good bye”

  7. Brett says:

    Sour grapes? No.
    Over-reacting? No.
    An inspiration for parents of autistic children? Yes. And for that I – and I’m sure many others – thank you.
    Great parents for a wonderful child? Absolutely.

  8. Jane says:

    Not sour grapes. I think professionals need to keep in mind that while they may have read many research papers and books, parents like you have been researching for years. It is important that these “professionals” learn to listen to parents. You cannot take parents out of the equation.

  9. Moi says:

    Progress? That’s a joke, right?
    School district personnel and autism professionals are not the same thing. Not all universities teach the same way. So not even schools in the same district teach their autistic kids in the same way, simply because of that HUGE difference in university quality.
    We are behind you all the way for your meeting. But please, take someone with you. This is how you get progress (of any kind). You are way too close to the situation (duh) and you need a witness, and maybe a defender who doesn’t care how the turkeys feel or what they want.
    There’s a big difference in the way a school treats a parent who Expects their child to become part of a community, have a job, etc., vs. how they treat one who Hopes for that outcome. Just the very idea that you got so upset shows how very badly you all have been stomped into the ground. They take classes on how to do this, too. That’s your progress for ya.
    Please take someone with you who knows their shti, and you may not ever have to suffer through any of it again. I know I didn’t. Know tomorrow that I am behind you with my middle finger ready to go. 😉 I just want to see you all have some peace of mind, and for him to get rid of that Dayum Helmet.

  10. So why?
    Why do you put up with it?

  11. I would not be so positive with the negativity. Different circumstances, but I would have taken Matt out of school the minute a helmet was mentiond. I have an online friend in Bakersfield who kept her son same age as Charlie home for six months while waiting the appeal and approval for some private school, this was yrs ago and he still attends that school.
    I hope this is the last week of the school and helmet. You need to write an article for the NY times, Salon and others to get this info out there about these restraints and helmet happening in 2009

  12. a parent says:

    Pulling a child out of school and keeping them at home isn’t an option for everyone. The daily structure of school, even when he was in a frustrating setting was important for my son. The gaps during summer vacation are very hard for him. Other parents don’t have the financial ability to stay home with a child.
    I think addressing problems calmly, without going on the attack, while working towards a consensus of a solution is the best approach. I will echo what “Moi” said. Take a lawyer this time. They are not listening to you and a lawyer who has successfully dealt with this school system will get things moving and make the meetings more respectful. In Maryland we have the Maryland Disability Law Center (http://www.mdlclaw.org/chemicalcms/special_education.php). There must be similar lawyers in NJ that know how to work the system to get Charlie what he deserves.

  13. a parent says:

    Pulling a child out of school and keeping them at home isn’t an option for everyone. The daily structure of school, even when he was in a frustrating setting was important for my son. The gaps during summer vacation are very hard for him. Other parents don’t have the financial ability to stay home with a child.
    I think addressing problems calmly, without going on the attack, while working towards a consensus of a solution is the best approach. I will echo what “Moi” said. Take a lawyer this time. They are not listening to you and a lawyer who has successfully dealt with this school system will get things moving and make the meetings more respectful. In Maryland we have the Maryland Disability Law Center (http://www.mdlclaw.org/chemicalcms/special_education.php). There must be similar lawyers in NJ that know how to work the system to get Charlie what he deserves.

  14. Moi says:

    She doesn’t have to take a lawyer. An advocate would be best, and in lieu of that even just another Face to be a witness will suffice. If they ever had to go to court, she’d have only her word. Even though she is a professional educator, it means nothing in court since her field is not autism education, and the school district would run roughshod over them.

  15. Moi says:

    She doesn’t have to take a lawyer. An advocate would be best, and in lieu of that even just another Face to be a witness will suffice. If they ever had to go to court, she’d have only her word. Even though she is a professional educator, it means nothing in court since her field is not autism education, and the school district would run roughshod over them.

  16. a parent says:

    I’ve had no experience with advocates, but I can say that having a special education lawyer at an IEP meeting went very well for us – it’s hard to imagine it could have gone any better with anyone else. Everyone was polite, commitments were made and kept, processes were followed, laws were never forgotten. I firmly believe that this happened as quickly as it did because of the previous results that this specific law firm had had with our school system. I am not saying an advocate couldn’t have gotten us similar results, but I doubt it would have happened so fast. Since we felt there was a safety issue involved, fast was very important to us. Since then we’ve had many IEP meetings, and we’ve never brought in a lawyer or an advocate – as long as we really are a team trying to help my son, it’s not needed.

  17. a parent says:

    I’ve had no experience with advocates, but I can say that having a special education lawyer at an IEP meeting went very well for us – it’s hard to imagine it could have gone any better with anyone else. Everyone was polite, commitments were made and kept, processes were followed, laws were never forgotten. I firmly believe that this happened as quickly as it did because of the previous results that this specific law firm had had with our school system. I am not saying an advocate couldn’t have gotten us similar results, but I doubt it would have happened so fast. Since we felt there was a safety issue involved, fast was very important to us. Since then we’ve had many IEP meetings, and we’ve never brought in a lawyer or an advocate – as long as we really are a team trying to help my son, it’s not needed.

  18. autismvox says:

    @Laurentius Rex, Glad you asked—We’re not putting up with it….. working a bit behind the scenes……
    Just to clarify, tomorrow is not (better not be) an IEP meeting. It’s _supposed_ to be intake but who knows what the school district will spring on us.
    @Moi, laughing all the way—-

  19. autismvox says:

    @Laurentius Rex, Glad you asked—We’re not putting up with it….. working a bit behind the scenes……
    Just to clarify, tomorrow is not (better not be) an IEP meeting. It’s _supposed_ to be intake but who knows what the school district will spring on us.
    @Moi, laughing all the way—-

  20. Mothersvox says:

    Great post, Kristina. How does it go in French . . . le plus ça change, plus c’est la meme chose?
    The arrogance of some educators and psychiatric professionals is, well, something that seems not to change.

  21. Mothersvox says:

    Great post, Kristina. How does it go in French . . . le plus ça change, plus c’est la meme chose?
    The arrogance of some educators and psychiatric professionals is, well, something that seems not to change.

  22. autismvox says:

    Mais oui, vraiment!
    That is, you said it.

  23. autismvox says:

    Mais oui, vraiment!
    That is, you said it.

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