"My Son Has the Kind of Autism No One Talks About"

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No.

I think that's just totally wrong.

Funding for service is not the Thunderdome.

This is the same zero sum game thinking that was in the article.

Why?

Why not adequately fund all the services for the people who need them? How about your kid is taking away truly needed services from parapelegics?

Not a fair dichotomy? How is it any different?

What if the same logic were applied to other medical conditions. "sorry, we can't treat your hypertension--come back when you have a heart attack and then we can do something for you. If we took care of you now, we'd be taking services from the truly needy."

<START RANT>

Wow.

Just wow.

Yes, I tricked a doctor into diagnosing my daughter with autism so she could get services she didn't need and waste taxpayer money. I really got a kick out of arranging and attending thousands of hours of therapy. It didn't affect my ability to have a job or anything. Heck, I think most parents have an extra 20 hours a week where they have nothing else to do.

See, here's the thing. I honestly believe one day my daughter will be able to hold a job and pay taxes. Now, I truly can't know if the fact that she got unnecessary services that took away from "more needy" children has anything to do with her functioning now, but I would like to think the thousands of hours of therapy had some kind of impact. So it would seem to me that the investment in her functioning will probably actually pay off eventually. Go figure. If I was an ignorant person, I could say that services are wasted on low-functioning kids because they will never be independent or hold down a job anyway, so what's the point? But I would never say that because it is absurd. All kids deserve to meet their full potential.

You are right. Kids should get the services they need. I think you are rather ballsy to suggest that you know what my daughter (and kids like her) needs, based only on knowing where she falls on some ill-defined spectrum.

<RANT OVER>


That is a really prejudicial thing to say...I am imagining that you made your statement without thinking it all the way through...

The only thing that I would add is this, 2.5 is too young to know where your child will end up on the spectrum. All kids develop at different rates, ASD children arguably more so and more spikily. At 2.5, one of my sons was still non-verbal and stimmed most of the day. At four, he now has the same amount of words as his peers, although his language is still behind by about a year, and he still stims, but does lots of other things too. And his cognitive ability tests at average (I think it's really higher, but hey, I'm his mom ). He was diagnosed with classic ASD, by the way, and now is considered to be high functioning, but when he was diagnosed at 16 mo, had the language of a 9 mo old and because of that, they rated his cognitive ability as something similarly low (in the reports - I didn't even know that 9 mo olds rated on the language scale!). We have to be careful about these 1/0 black and white distinctions. You may think you belong to one camp, then your child will either straddle the bright line or show you that you belong to another entirely. In either direction. And I echo InThisTogether - if intervention now can help my child be a tax paying citizen for the next 50 years of his life, I think it's money well-spent.

I don't think that children with high functioning asd should not get help. It's not what I meant. I have heard directly from parents who pushed to get an asd diagnosis because they thought it would help their kids development and the diagnosis opened up 20 hrs of one on one instruction. Many people try to get speech services because it's free babysitting and is beneficial for their perfectly normal kids. Many therapists love these easy cases and why not they get paid the same amount. For kids on the spectrum I think it is beneficial to separate the high functioning from low functioning cases because they have different needs. I think people read my post and concluded that I was against services for hfa. Here is a question to those parents ranting back at my post: how would you objectively handle the fact that most therapist or schools would never take low functioning kids if they they could avoid it? Is it fair to ask a teacher to take much more abuse/frustration for the same compensation as an easy case?

Definitely agree that the approach has to be different. It would be hard to define even what language meant. Saying words doesn't mean the person can have a functional conversation. I think that the problem is that many teachers therapists and even parents like me often times have no idea what to do in a lot of situations and what the best approach is.

Good point. I guess that's why they have IEP's. When I found out my son had autism in my mind I pictured it as being a difficult child with lots of tantrums. Then I watched rain man and when they said it was HFA I freaked out because I thought the character was so strongly affected. Fast forward 1.5 years and now I see so many of the lower functioning cases and wonder if its even the same condition as the so called "quirky geniuses". Does having social awkwardness quality these days as autism? I wonder if I would be diagnosed these days myself because I never played with kids and talked like a professor? My opinion is that there is HFA, and LFA and somewhere in between and there are many people who over-analyze and over-diagnose the crap out of their perfectly NT kids.

I agree that it would be nice to have each child receive the help that they need. It would also be nice to have less than 40 students in a regular classroom, and music, and funding for after school activities. The reality is that education doesn't receive enough funding so it is possible that the teacher that you are getting is being taken away from a kid who has much stronger issues. Does it mean your child shouldn't get any extra help? No, but I think it should be divided fairly. At least you are not doing anything wrong because you are being honest and maybe your school district can afford this. However there are many parents who are very dishonest in asking for services.

I don't know what parents you have met, but I have never heard of a parent pushing for an ASD diagnosis, and have never heard of a doctor whose report would be taken seriously who diagnosed a kid with Autism just because the parents wanted him/her to. Most of the parents I know who got and ASD diagnosis had to shell out $4000-$5000 to get a report that the DOE would not question- and those doctors would NOT give an Autism diagnosis lightly. I also don't agree that many therapists love easy cases. I think you are perceiving things through some bitterness. As far as I can see here in NYC, there are some schools that take exclusively low functioning kids (as you put it), and some that take kids who are more verbal and have interest in socializing. Some take both. I think it's more about placing kids in their own right situation.

I also don't know any speech therapist who allows drop off, parents usually stay for the session. Plus, I also know many parents who tried to get speech therapy covered, but were denied and had to pay out of pocket because their kid was just over the line of being in true need (defined by the state), but clearly had real speech issues.

BTW: at 2.5, my kid had very few words, and no one understood those words but me (and he STILL did not qualify for speech at this time). He was not potty trained fully until almost 6. Now, he has a vocabulary well above his grade level and is very verbal.

...Hm .

I'm really not sure what you base this on, where I live children who are hard to serve are accepted by schools and providers will work with them and the public school settings have to find a way to serve kids, somehow. Is your child being rejected by schools? It is the districts responsibility to find an appropriate placement. There are some agencies that can help if that isn't happening, did you write you live in NYC or somewhere else?

I think things are not always what they seem. If you are talking about services through the school districts, children have to score low on tests and often have to be having trouble functioning in a normal environment. Parents won't always say the bad stuff, but children don't get services when they are fine and not enough services is actually IMO the real problem.

I just don't think think it's useful to say services should be different, do some kids need more hours? Certainly. But it still can't be one size fits all, we don't know enough to say what exactly should happen beyond that the program needs to fit the individual child, and anything a low functioning child cannot do could be something a high functioning child cannot do, it doesn't make sense to separate to me beyond by intensity.

Also I want to say again that kids can look really good when they're in a comfortable place, your child may surprise you once he is in a school placement that is right for him. He may even start to look like one of the higher functioning kid! I'm not saying that should or shouldn't be your goal, just that it sounds like you'd like to see that. So I hope you do.

I am not saying that HFA kids should not get services. Your example is perfect. Do you need to place a person with hypertension into the ICU and immediately get the doctor to see them? No the heart attack case will get priority and the patient with hypertension will also be seen. Unfortunately kids who are borderline autistic get the same 20 hours of ABA with the same exact teachers as the low functioning kids. And when it comes time to get into schools programs for HFA students are easier to get into and often have better quality. Also paraplegics or kids with global delays should get priority for physical therapy over someone like my son who has bad balance, but that is not the case since we got more PT than speech when the services were allocated.

I don't know you or your daughter and at no point did I say that services should be removed for HFA kids. I think the fact that you said your HFA child will be a taxpayer while the LFA kids will not and are basically useless is pretty low. For an ASD parent to say that is shameful. Maybe your child is on the spectrum but there are plenty of people who take advantage of the system.

I am glad your son is speaking now. Personally if I am lucky enough to be in the situation where my son gets better and gains speech, I would be ok if he had less services. I think also he would benefit in a different setting such as an integrated classroom.

I guess its better if I explain what we went through. At 14 months when my kid didn't make any sounds we qualified for speech and OT. The therapists were awful and all they did was puzzles with him. At 20 months we got the diagnosis and the 20 hrs of ABA therapy through EI. The problems came during the CPSE process. The board of ed started basically giving everyone the same mandate so we lost hours. Many CPSE schools had plenty of room in larger classrooms catered to high functioning kids. On one of these tours a parent confessed that their kid doesn't have autism but they got the diagnosis so that they would be in a smaller classroom. The better schools had limited space in the smaller classrooms, and the schools that did have space did not seem as competent. In the end we did get lucky because we found space in a great school but I thought that the process leaned heavily against kids with the most need. That is my experience. From what I hear about the next stage, 5+, if a child is HFA they can get into nest or horizon programs which are considered really good but if the child is LFA their choices will be pretty bad.

My son (age 8 now) is in a nest, it is his first year in it. You may find that your son will meet the criteria for horizon or nest by the time you are going through the turning 5 process. There are kids in the nest who went from non verbal to a horizon, to a nest. If he is not at that point, have you heard of The Rebecca School? It is private, but the school helps you with the process of getting funds from the DOE for tuition. I also know other families who are happy with other schools and would be happy to ask about them for you.

I do understand your frustration. My son had a pretty hard time in his cpse school. They basically told me they thought I needed parenting classes because they could not understand why such a smart kid would have such a hard time controlling his emotions, then they thought he had a muscular disorder when he was actually stimming. I have two kids with IEPs and have had really bad OT experiences, as well as great ones. I have also had to fight tooth and nail to get my kids minimal services at times. Getting my kid into the right setting was an awful experience that required a lawyer (long story I don't want to go into to protect my identity on the web). This process can really suck. But, there are great places out there, and therapists who truly care.

When I see these jeremiad articles, it seems to me that there nearly always an unwritten, bitter, accusative inference that we are really the "fakes", and they have the corner on "real autism", and therefore we are not entitled to participate in the conversation/narrative, because we haven't walked a mile in their shoes ( some of us have) and they always ignore the fact that they are completely unwilling to imagine walking in our shoes; their aim is to discredit us and exclude us from the public conversation, and (frequently it seems to me) to elevate their suffering to the status of martyr.

So, to me jeremiads of this type are extremely insulting, often based on false and outdated ideas of what the autistic spectrum is, (especially if they are mouthpieces for Autism Speaks and related organisations, as many are) and intentionally misleading: they want the public to believe that only the most severe autism is ‘real’ autism.

They know much more, I think, than they pretend; there is a wilful ignoring of the increased understanding of autism we now have and which is readily available to everyone. Do these parents really believe that everyone else - including the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism - and adult autistics themselves have got it totally wrong? Everyone is out of step but them?

In their view, we don’t have any ‘right’ to complain about the barriers and difficulties we face as neuro-atypical adults. They define us as 'the enemy' somehow, and only their complaints are valid. They are very vocal, very publicity seeking, often make outrageous claims, and are characteristically lacking in empathy for autistic adults and children who are not like their own.

There is the ridiculous attitude that if we can function somewhat like neurotypicals - don't smear crap over the walls - even speak or write eloquently - then we can't possibly be autistic, we are just riders on their wave trying to benefit from their suffering in some way. This is so ludicrous that it is out of touch with reality.

Contrary to the Autism Speaks 'rule book', autistic adults and children vary greatly in their abilities, degree of independence, self care, aptitude and accomplishment level. The common factor is that all have major or particular issues in a world that doesn’t understand, tolerate, accommodate or accept neurodifference.

As well as the incorrect assertions of these parents, there is also the assumption that we don't care (as well as being frauds!) I don't believe that is true; we want a better deal for everyone on the spectrum. I am not at all convinced that they share that hope. I think they are inverting reality: it is they who don't care about us, and their mission is essentially destructive, and I shiver to imagine their hidden attitudes toward their own children, unexpressed but no less toxic for that. Some are no doubt understandably bitter because there is not sufficient support; that is a legitimate complaint - though instead they typically direct their anger not to the failure of service providers, bit toward us and anyone who advocates for us (like Steve Silberman). I do feel for these parents - at a deep level there seems to be a vortex of painful emotions going on - disappointment, rage, envy, resentment, bitterness, feelings of being cheated by life and trapped with children of a kind that they did not want and do not want. That must be an extremely painful life condition. But one's own pain is never cured by deliberately trying to wound and diminish others; this seems to be what they won't, or can't, see.