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

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I think you should go back and read what I actually wrote, not what you "heard" me say in your head. I said:



I said IF I was an ignorant person (which I am not). I also said I would never say that because it is absurd.

I'm not sure how that came through as me saying that LFA are useless because they will not pay taxes. I do, however, think the statement is as absurd as you saying that some of the

I don't mean to be rude by asking this, but are you certain you are not on the spectrum, or close to it? I ask because when I started this journey, I was asked the same thing. At first I emphatically declared "NO!" But then I started to realize that although I do not have both feet firmly planted on the spectrum, I have one foot in. I definitely have some overlap.

I think the above could either mean you were not really paying close attention when reading what I wrote, or perhaps your interpretation is quite literal. If it is the second, I have found it very helpful to me and my kids to understand where my overlap is. If your kid is 2.5, you have a long road ahead of you, and the more tools you can get under your belt, the better. Understanding my "shadowy" traits and realizing I have ADHD has been key to our journey with ASD and ADHD.

I have heard of this before - and I've seen this happen, but I don't think it applies in this particular discussion.

For example, a friend has a son who is probably BAP at minimum, but only needed OT for sensory issues and low muscle tone. I think they finally got services via a diagnosis of autism...not that the son did not have autism, just that there were no speech/social skills needs typical for a kid on the spectrum. So, yes, but that's not parents making something up to get unneeded services - they did not take other services beyond the OT.

It's also the case that we don't really know an awful lot about "invisible" disability, and the labels that make things easier for some of us actually make things harder for other kids: ADHD and ADD are sometimes (illegally) left unsupported because those diagnoses aren't specifically listed and fall into the "other impairment" that schools feel they can ignore. Oftentimes the need for services is the same as if they have an autism diagnosis (executive functioning support, social skills support, sensory needs) so I can see where that might happen.

In neither of these cases, though, was there a child who didn't need services whose parents were abusing the system.

This is getting weird since having a diagnosis of ASD does not mean getting services in the US, it may help but there are a lot of kids with diagnoses of ASD who don't get services. It's not a guarantee. And if doctors use the diagnosis to get services the child still has to score low in speech or fine motor skills or whatever the services will be in or the district does nothing, and most of us would not say that a child in the first percentile for fine motor skills who is diagnosed with ASD and gets OT out of the label is somehow wasting money......I don't see that as much of a problem and honestly, I think that child needs the OT whether they have an ASD diagnosis or not. But they might not get it without another label. And without low scores in language they'll get no speech. Without behavioral problems interfering with functioning they won't get behavioral interventions.

I agree the idea of parents demanding unneeded services is way overblown. Plus they label you as weird and problematic if you're on the spectrum and looking for services for your child, but that's school staff being uncomfortable with parents who seem weird and it's not a sign the kids don't have real needs.

I think that we both misunderstood each other. My comments were more in relation to the article which mentions more severe forms of autism. I think that having a one size fits all approach doesn't work. That's really what I meant. I believe that you are the 10th person on this board who has told me that I am on the spectrum. I am probably like you one foot in, one foot out. I've never had delays or sensory issues but I've had problems in social situations. I think that parents oftentimes overreact to people like myself and start putting them into autistic programs. I believe that I never needed any extra help, and I feel that my "autistic traits" never really hampered me.

I think that we both misunderstood each other. My comments were more in relation to the article which mentions more severe forms of autism. I think that having a one size fits all approach doesn't work. That's really what I meant. I believe that you are the 10th person on this board who has told me that I am on the spectrum. I am probably like you one foot in, one foot out. I've never had delays or sensory issues but I've had problems in social situations. I think that parents oftentimes overreact to people like myself and start putting them into autistic programs. I believe that I never needed any extra help, and I feel that my "autistic traits" never really hampered me.

NYC. The board of ed treats parents like ***t. After 5 th grade they actually mix other types of problems such as emotional disturbance with autistic kids. I'll probably have to move in 2 years.

service coordinators in EI are useless (at least the ones we had). We had to do everything ourselves. At CPSE level, you get to meet your representative who politely tells you that you are not eligible for anything beyond CPSE. CPSE schools get very tricky because they are all very different. After grade 5 unless your kid gets better you are relegated to district 75. I have not heard good things about district 75.

service coordinators in EI are useless (at least the ones we had). We had to do everything ourselves. At CPSE level, you get to meet your representative who politely tells you that you are not eligible for anything beyond CPSE. CPSE schools get very tricky because they are all very different. After grade 5 I heard it gets worse.

In NYC ASD diagnosis gets you 20 hours/week of ABA in EI. Later it helps when you apply for CPSE programs.

The cases I'm talking are where the child has a clear disability like blindness, and the doctors also diagnose autism while knowing that the child doesn't have autism. I think the children should have access to the services in the first place to avoid these false diagnoses.

About parents pushing for an ASD diagnosis. There was a huge post higher up and I didn't want to comment under all that.

The parents do wrangle for an ASD diagnosis, where I live, because it is so damn hard to get any services for kids in school. ASD is one of the few diagnosis a child is guaranteed access to all services, speech pathology, tech accommodations etc.

Because I live in a moneyed area (I don't have money...I live in the "hood section"), parents will pay the $2K+ diagnosis. There are some doctors who are known as "easier" to get a diagnosis than others.

If you have a kid with supposedly ADHD and has some behavioral issues (transition meltdowns..which are not exclusive to ASD), you can plead you case with the doctor. There will be kids that are sort of "fuzzy". They may have this or it may be that. The parents here will tweak things to get the most for their children.

I know personally three parents who did finesse an ASD diagnosis for their then 2nd graders. Our school district hates IEPs, and the 504 plans are a joke. Auxiliary services cost $$$$, and insurance won't cover without a bcorrect" diagnosis.

While I don't think doing the above is the norm, it certainly does happen.

I disagree about it being so easy to get that, but since that has been your experience and it seems like a lot, assuming there is also speech and OT which presumably any child with ASD who needs that should be getting.....I don't understand your bitterness about there not being adequate services for your child because of the supposed taking advantage by supposed HFA and normal kids and parents.....what are you feeling your child is being deprived of beyond this amount of service?

Not being sarcastic, I really am not understanding.....you write about the city not doing enough, what do you want?

I have never personally know anyone to seek an unwarranted ASD diagnosis. I have, however, known more than a few parents of kids who appear to me to have ASD who will not seek a diagnosis for their kid out of fear of the stigma attached. These are invariably parents of HFA kids and they adamantly insist that their kid will just grow out of it. These kids are missing the opportunity for services that will possibly make their life easier in the future.

I do know people, and my friend who is a HS teacher knows even more, who have gotten their kid an unwarranted ADHD diagnosis. Not to get services. But to get accommodations. Specifically testing accommodations. It is an extremely competitive school with a high degree of pressure placed on the kids. The parents want the accommodations in the hopes that their kid will test better and get better grades and therefore get into that Ivy League school. Although it doesn't have a monetary cost to it, I find it deplorable. They are teaching their kids that it is OK to lie and deceive to get ahead. Yuck.

In my school district, ADD/ADHD/ODD and Bipolar diagnosis are almost always punted under a 504 plan. The reason being the issues are considered behavioral. Period. If you can get the behavioral issues managed, they'd all be scholars. (eye roll)

And you dear parent have created these monsters. So yeah, no support at all.

Your ADHD kid has crap writing, and poor social skills. That kid needs a medication adjustment, and not help with OT and maybe a social skills class.

Your bipolar child has issues with transitions, peers, and can be overwhelmed with stimuli? Medication adjustment and some parenting classes for you!

The district is very cut throat. If your kid can't swim with minimal help, all they offer is a self contained class.

Elementary school gets less of the 3rd degree if you kid needs services, if you have something like an ASD diagnosis. Middle school is a whole different ball game. Your child better be able to "cope" with the minimum help. You'll get tech support, but a few meltdowns in the hallway, and the school will push for the self contained school. There are sped services (not much) in the school, but if the teen needs heavy duty scaffolding, they'll really force your hand to the 6-12 special ed school.

This is why people around me try and get an ASD diagnosis around kindergarten, if they believe their child needs services. They hope after 6 years of services, the child will be able to cope okay in middle school. My kid's elementary school starts pulling the scaffolding back in 4th grade, amd really tries to remove it in 5th as a test drive for middle school.

The behavioral kids are just screwed. Middle school will be a 3 year nightmare, and most wind up in the alternative high school.

ADHD diagnosis in middle school is huge in my area for the unlimited testing time, and using tech instead of a blue book during a test.

We have the same performance pressure in my district. Any Bs on a report card might as well be an F. It isn't if you get into an Ivy university, but which one.

It gets worse at the university level. My friend works in disability services at a university here. It is all about unlimited test time, and getting hours accommodations for testing.

Buying the autism label for your child when they don't have autism is very scary for me. I am shocked that you can actually get your kid diagnosed with it when they don't have it just to get services. I wonder if that mean if an adult can get an autism diagnoses too if they wanted to when they don't really have it. I wonder if i could get myself diagnosed with Bipolar. I already have anxiety so all I have to do is get out of control and act like a maniac and claim Bipolar and do the answers on the tests answering what a Bipolar person would answer and tell the doctor what they need to hear to diagnose me with it. I have heard on here from a member how he got diagnosed with autism but then decided to get retested because he said he exaggerated on the tests and when he retook them, they all came back negative. This is also one of my biggest fears about it which is why I wouldn't trust myself with my own assessment of me because I could be exaggerating and not even know it so it's best to involve your children, your partner, your parents, anyone who knows you and is part of your life.

The fact that it's possible to get your kid diagnosed with autism when they don't have it makes me think you can get diagnosed with anything if you work at it. All you have to do is look up on the condition and study it and read about the symptoms and act them out and tell the doctor about it during the testing. But I would think the tests would show the opposite and that certain things are kept between doctors for conditions and never mentioned in books about it for this very reason. That is what I have heard on Facebook once about autism, that certain things about it are kept out of books and webpages for a reason. But I guess if you have a good friend who is a psychiatrist, you could always talk to them about it and bam they are basically helping you getting a label you want.