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

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I think "parents pushing for services for kids who don't really need them" is a straw man argument. There may be one or two, but the drawbacks far outweigh the benefits.

First of all, schools are mandated to fund whatever disability comes their way, and in fact there is federal money sitting unused for that purpose: http://www.wrightslaw.com/blog/?p=4523

Second, I think that the straw man argument is actually created by overtaxed school staff and not by parents. I think it's how they sleep at night when they took advantage of our credulity and withheld services from my son until he had deteriorated to the point of needing to be put on suicide watch. We had been trying so hard not to be one of "those parents," without even realizing that the idea of "those parents" is a school budget tool (albeit probably an unconscious one.)

Basically this is what they did with my aunt who has schizophrenia. Because of laws we have that are meant to protect them but instead it makes the state not help them when they need it. My aunt would get in trouble with the law and she would be taken to the hospital instead of booked in jail and charges being pressed and she would be released in three days. My grandparents tried for years to get her help and to keep her there but they kept releasing her because she wasn't sick enough. Then when she did get sick enough, they were finally able to hospitalize her. But perhaps if anyone knew my cousin wasn't going to school and that he was being her caregiver and the parent to his sister, then that might have told the state "Oh my gosh, this woman really is sick and we must help her. She is not competent." Everyone did find out eventually he wasn't going to school and by then it was too late because he got so far behind he dropped out. He also didn't tell anyone he wasn't going to school because he had to protect his mother. He didn't want her to be taken away or get taken from her.

He goes to a private school but they also work with the school district.

I'm sorry to hear that Bkdad. This journey really is frustrating. I don't know the NY system. Have you considered contacting an attorney?

And I never took advantage of full services for my children. They didn't need them and I deemed too much to be harmful, despite the recommendations. Instead of 40 hours of ABA, we did 15. But there were other services that I thought that they needed that we couldn't get full access to. We ended up paying for extra speech and OT out of pocket because they only gave us 30 min a week of each through early intervention. It was very expensive.

So I really am sorry that you're having a hard time. But I think the problem is more with the system than with parents "gaming" it. I'd argue that parents of children who are high-functioning and enough to pass tend more toward delayed or no-diagnosis because of the stigma associated with the title. It hasn't been my experience that parents of NT or close to NY kids are rushing to neuropsychs in droves in hopes of getting to say that their children are autistic. Most for folks are still scared of it.

FWIW, my daughter lost services that she still needed at the age of 5 in our old SD because she was "too high functioning." My son NEVER got old services in our old district. Our new district just shook their head in disbelief saying "he should have been getting services all along." Both of them carry diagnoses, so I don't know where you live, but where we were, a diagnosis was not a guarantee that your kid would get services, and pretty much everyone with a high functioning kid had to fight to get anything. And this was in a MAJOR US city, not some tiny district somewhere that struggles to get by. There was any disparity there, it seemed to be mostly related to parental involvement and education. If you knew the right words to say, you got more services. This left children of undereducated and immigrant parents at a huge disadvantage, whether they were low or high functioning, but once you hit 5 years old, services became difficult to come by for most people.

I would not handle the fact that most therapists and schools would never take low functioning kids if they could avoid it by taking services away from "easier" cases. I do not know where you get your data to even suggest this is true. I also don't think this is an "autism" thing. I think most people would take "easier" over "harder."

Your second question strikes me as strange, probably because of my association with healthcare. There are "hard" and "easy" cases all the time. Everyone, whether you are a nurse, a CNA, a PT, an OT, a PA, or an NP, gets paid the same rate (accounting for profession, of course) regardless of what kind of case you are working on. Do I think it is fair? Probably not. But most employees are paid a salary no matter what they face or an hourly rate that is the same regardless of what they are doing. Again, I am not sure how this is related to high functioning cases "wasting tax payer money and taking services from more needy kids."

I do not disagree that HF kids probably require "less" or "different" services than LF kids. But that doesn't mean that they need the services they do need less than a kid with LFA needs his/her services. What got my hackles up is the idea that providing HF kids with services is a waste of taxpayer money, the implication that parents of kids with HF autism somehow obtain a "shell" diagnosis to get unneeded services, and the idea that services for HF kids take away from services for LF kids.

Those ideas are offensive to me, and they would be offensive to me regardless of where my kids fell on the spectrum because, IMHO, it shows a lack of respect for people in our community.

I have to leave for work. I am sure I am missing posts. I will be back later.

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We had so many of these issues. The school felt he was "too smart" to have behavioral issues. They were constantly trying to blame our parenting, despite putting our son through multiple changes he could not handle, some without even telling us, and not giving us time to prepare him.

They tried to guilt me into letting them drop some of his OT time by saying other kids had worse handwriting, as if that was even his only issue, and he wasn't even using a mature grip.

They claimed they were doing so much for him, by giving the classroom (not him---the classroom) a part-time aide who was really a bus driver and untrained in ASDs and then complaining when he took up too much of her time. The list goes on and we finally had to yank him out and home school him.

Except for pragmatic speech they never offered him anything unless a teacher and/or me insisted he needed it and fought for it.

I don't know what universe exists where high functioning and NT kids are being offered all these extra ASD services, but it sure is not mine. I guess you could say that the NT kids who "get" to also be in an inclusion class, also get access to the aide, which is true, but I doubt that it is really such a big plus, especially since they also have to deal with the disruptions that an ASD kid they would give an aide to here would cause.

Most people have been through a lot. Focus on how unfair the world is and be unhappy, focus on progress and enjoying your child exactly as he is, it's up to you. It is irrational to blame his having bad therapists on supposedly higher functioning kids of faking parents. If your goal is your child's long term well being, you must single mindedly focus on that. Not on this imagined fault that lies with those who started out or grew to appear to be and perhaps are not higher functioning, it's an ugly thing to do to the person you hope your child will become and a complete waste of time and energy.

The EI system is going to be more child and parent friendly than the CPSE system and unless your child is going to be fine you will be better off learning how the systems work because CPSE is then going to be more friendly and easy to work within than the CSE process at school age and your child will be better off with a parent who accepts the reality enough to advocate within the systems that exist rather than blaming other children and parents for how we as a society set the systems up to operate. If you don't like it, work to change it, but please, stop blaming other parents and kids. And if you're stuck on that parent(s) to saying their child(den) do not have autism......I'm just wondering how you know that parent isn't lying to him or herself. But in a way it doesn't matter. It's still hurtful when you blame the parents of kids on the spectrum, many of us on the spectrum ourselves, some diagnosed, some receiving services growing up, and some not.

Your child having bad service providers and trouble finding a good school is sad however it isn't because the good ones are serving "easier cases" that's the antithesis of what good therapists and good schools do!! Please consider that quite simply it's hard to find good providers and not everyone who school or provider is good, much less good for every child, nor are they necessarily the right match for your child. Good providers are the ones who seek a challenge and creatively try to address it, and this isn't just pie in the sky talk, kids who are "harder cases" aren't likely to thrive with lazy or uncreative providers, and making them take the "harder cases" might frustrate your child and do more harm than good when they don't have the skills to address your child's issues.

Done with rant. But really, for your sake and your child's.....educate yourself about how best to effectively advocate. This may be a long haul.

One last thing. I take people as meaning what they say, it seems to me you may as well. One of the hardest things for me is dealing with people lying. Within these systems that provide services for kids, my experience has been that people say a lot of things as ways to manage and control the person they are talking to. In other words, and others may have had a different experience, but I would suggest preparing yourself for the fact that people will probably at times say misleading or untrue things, and you may have to respond to that.

If this were any other forum here I would have just written NTs lie. So when they tell you every child gets the exact same services, I understand that's infuriating and makes you want to blame someone, to me that statement is suspicious, and even if it's what they do, in the US they are legally obligated to have an individualized plan for every child they classify as having a disability, so if there is something you feel your child should have, I don't know exactly the rules where you live, but throughout the US, you have the right to seek (and pay for) an independent evaluation (and aspect and OT and PT are generally a lot cheaper than psychological) and to ask the district to consider the recommendations. And you have the right to ask for an independent eval they pay for and consider the recommendations from. Every child gets the same interventions is suspicious, it doesn't follow the rules, and because of that, if they did it, I think they'd lie about it. So push back where the problem comes from. This is your child.
Other people's children are for them to worry about, when you meet about your child's needs that's what I think you need to focus on.

Thank you for expressing all of this so well.

I tried to write something similar last night, but connectivity problems prevented me from posting and when the page reloaded, the post I had been writing was irretrievably gone. Having read this, I don't have to try again today. Everything I wanted to say is here and said so well I have nothing to add but to heartily agree with all of this.

Thank you SO much Adamantium.

I am alway unsure if I make sense, am too impassioned, too pressured, or too vague.....I am very grateful to people at Wrong Planet for the patience you have.....but thank you also for telling me I made sense today!

I don't think that more services or continuation of services beyond certain developmental milestones are generally good for hfa children. I think services should be pulled back as the child grows and learns more things and gains more control of own behaviors. Training process for adulthood and independence is important. I doubt that I would have benefited from lots of services when I was a kid, I think I definitely learned things faster and grew up to handle more things on my own without much accommodations anywhere. I had a few good ones at various times in K-8, but nothing from 9th grade onwards.

For lfa children, the stress to the child should be taken into account more, as so many hours/week are recommended, and it seems much too stressful for any child.

I don't know such parents, but I have heard of them. When we got our assessment and debated not following through with it, worrying about labeling, the school principal let me just how many people actually seek the label out for the "benefits." BUT. Here is the thing, schools and similar who award benefits based on diagnosis do their best to weed those people out. We were studied closely during the entire process to make sure we were the "right" kind of parents. If you are talking about private therapists that families pay for out-of-pocket, I don't really care how many think the parents have given their child a fake label and are taking the easy route; that is a commercial transaction between the people involved. Yes, such families make skeptics out of those who provide services through schools and insurance, but that doesn't mean the skepticism can't be overcome when the need is real. It is an imperfect process, obviously, but so are all attempts at labeling. The issue that worries you, Bkdad82, is a natural side effect to offering services at all, and the best way to combat it is training and experience, not more arbitrary lines and labels.

I am sorry to hear what you've had to go through. Are you New York City or just New York state? If the former, well, you are simply in probably the worst system anywhere, JHMO, with people who will do anything to gain advantage. My SIL in New York City is home schooling both her kids who are quirky but not diagnosable, because she couldn't handle it. We don't have quite as many dog eat dog types in our school district.

Have been researching school funding and came upon this article, which corroborates my feeling that the "abuses" are a creation of the school districts: http://educationnext.org/debunking-a-sp ... tion-myth/

Do you mean the parents are dog eat dog, or the service coordinators?

Sometimes doctors diagnose non-autistic children with autism to get better services than available to other diagnoses.
This happens across the spectrum, as almost anything can be spun into autism if people are motivated to get services.