Getting diagnosed as autistic

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Forum -> Chinuch, Education & Schooling

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amother

Mon, Jun 17 2019, 11:57 am

My son is 4 and in kindergarten. He gets OT/PT/Speech and some SEIT. The school contacted the end of December. They didn’t spell it clearly out, but basically they decided that my son is on the spectrum. They wanted me to change insurance plans ASAP so that he can get insurance that covers ABA. And they gave me the name of someone to go to for a psychological evaluation for autism.

I spent the time and money and met with the psychologist. She told me that he’s not autistic. Not even borderline. I was relieved - I never actually thought he was but the school made me second guess myself.

A few days later I had PTA. This was the first time I was speaking with the teacher - in the past I’ve only spoken with his therapist and the special Ed coordinator. The first thing the teacher tells me is that the psychologist doesn’t know what she’s talking about. She said that she has 14 years experience as a teacher, and she knows that he’s def on the spectrum. Over the next few weeks I spoke to the coordinator a few times. Basically I was not willing to give my son ABA if he’s not autistic.

He is delayed a bit with language, and possibly has an issue with auditory processing (which he’s too young to diagnose). The school dropped the issue and I thing all was ok. Then a week ago the teacher calls me with the end of year report. She told me that she told the school that he doesn’t belong in a regular class. Basically they want me to send him to a special school.

A few people had asked me if the original psych had done CARS testing. It wasn’t on the report. I asked the agency and they told me to go ahead and do ADOS testing.

I finally reached the psych I saw in December. She told me that she did do CARS testing but he passed and did too well. The agency told her not to include it on the report since I was requesting extra SEIT hours from the BOE. The psyc said I can go ahead and do ADOS testing - but it’s so stringent that even kids without autism can be diagnosed with it.

Is that accurate? What do you know about the diff of CARS and ADOS testing? What are your thoughts on ABA? Does it make sense to subject a child with minor issues to it?

I’m hoping that with a better teacher and extra SEIT hours he will do better next year without that.

amother

Purple

Mon, Jun 17 2019, 12:10 pm

It does sound strange that the teacher is disputing a qualified psychologist's evaluation. Does he have any problems at home/outside of school? Symptoms need to be present in all environments to qualify for a diagnosis.

The first thing I would do is have a neutral third party specialist observe him in the classroom and give an opinion. That will give you an idea if it's just the teacher's issue or if there are real differences.

That said, I believe that ABA can only help issues, but insurance limits it to those with an autism diagnosis. The ADOS is considered the "gold standard" with autism testing, though both ADOS and CARS are legitimate tests. I have a child on the spectrum and am happy to answer an further questions posted here.

amother

Lilac

Mon, Jun 17 2019, 12:13 pm

Since a teacher cannot diagnose anything, and can only offer her opinion for further testing, I think she is way out of line. My son's teacher told us he is NOT autistic. We just went for an eval. and guess what the diagnosis was...

amother

Slateblue

Mon, Jun 17 2019, 1:44 pm

The world wants to.male you think otherwise, but "autism" is not an exact science. It is just a word used to describe people who have certain personality traits in common. There is no "gene" like in Downs Syndrome or something like that.

Try to remember that neither the teacher no the psychologist have any independent power, and HKBH decided how your child was made, and when (and IF) he will ever receive an official label.[quote]

Chana Miriam S

Mon, Jun 17 2019, 1:51 pm

I’m sorry your situation is so stressful. One of the most important things I ever learned was from the Doc who diagnosed my son ( dev. Ped.)

I questioned whether we needed a second opinion and he had referred us to the hospitals ASD team. He told me they worked all the time with ASD and this if he was wrong, they would tell him but at least my son would be getting help for his symptoms, which is actually how you treat autism.

The diagnosis makes it easier to get help. I can tell when a kid is on the spectrum most of the time so if you think the psychologist is wrong or don’t want teachers questioning further, get another opinion.

In reality it matters less what the dx is than whether your kid is in the right place to learn and grow and hopefully overcome whatever challenges he has. Maybe this school is not the right one for him. Maybe he isn’t ASD but they read him that way because they want cookie cutter kids.

In any case, you need to make arrangements to have school work for him one way or the other. Maybe there is an early intervention service local to you? They can usually tell. Or get a referral to a dev. Ped.

amother

Cerulean

Mon, Jun 17 2019, 2:05 pm

I am mixed on ABA and wouldn't be happy with the school pushing a specific therapy and I'm not sure this is the best fit for your child regardless.

That said, the ADOS is better validated than the CARS and I'm a little suspicious of the psychologist's dismissal. In your shoes I wouldn't know who to trust and would want an independent evaluation from a developmental pediatrician who does the ADOS. When my DS was diagnosed (outside of NY) he had a multidisciplinary evaluation with a pediatrician, OT, and SLP. This is the first time I've ever heard a psychologist say that the ADOS overdiagnoses kids.

amother

Mon, Jun 17 2019, 2:11 pm

They actually gave me the contact info for a top rated developmental pediatrician (Dr Huberman) back in January. But he had a waiting list until approx June, so they wanted me to see someone else right then.

When I called Dr Huberman’s office a few weeks later to make an appointment they asked me a lot of questions as part of intake. When she heard that I already saw a psychologist she wouldn’t make an appointment. Said they are too busy to be seen as second opinions. And he is too young for a diagnosis’s regarding other things like auditory processing...

Honestly I don’t think he’s on the spectrum. Most of his symptoms are only in school. They told me he does “stimming” in class. But he has never done it at home, last year in school, when he stayed at a neighbor when I was on vacation for 10 days. His OT/PT was shocker the school even thought he was on the spectrum.

And last week I was in a waiting room and was quietly talking to a woman near me. I mentioned I was having an issue with Morah __. Suddenly another woman across the room jumped up. She was hysterical - said this teacher ruined her sons year. Everyone says that she is rigid, but she said it’s worse than that. Her son got anxiety, didn’t want to go to school and suddenly had issues. He suffered that year.

Now I wonder if some of my sons actions are the result of anxiety he has in this teachers class. Problem is that the teacher is the principals sister and they’re always on the same page. Other parents in the room said they also didn’t have good experienced and now request not to have this teacher. I wish I heard about this earlier in the year. Talk about stress...

amother

Natural

Mon, Jun 17 2019, 2:17 pm

Teacher is majorly overstepping. A teacher doesn't get to say "I know it when I see it." That's fine if she wants to say that about a random celebrity or a character in a book, but not for students she actually works with. From what I understand, ADOS is the gold standard in testing for autism, so I'm wary of this psychologist as well. Seems you need a second opinion if you want to sort this all out.

Regarding ABA, I'm a huge fan, it's been great for my autistic son. I've also found that the techniques work really well with a different child of mine who has ADHD, so it's definitely true that it can be beneficial for things other than autism. Although insurance only covers it when there's an autism diagnosis. The only reason I discovered it's helpful for ADHD is because in learning the techniques from the BCBA in parent training, I used them on my ADHD son and found them very helpful, and I mentioned this to the BCBA who confirmed that it is indeed often very helpful for ADHD. I couldn't tell you if it's appropriate for other diagnoses. Maybe yes, maybe no. In any event, you seem to have too many people with an agenda involved here. I say get a second opinion from someone you have researched independently, not someone recommended by the school.

amother

White

Mon, Jun 17 2019, 2:29 pm

I'm going to bring another perspective here, though it may or may not be relevant.

Do you think this might have to do with funding of any sort?

I have a relative who has had an awful amount of trouble getting a diagnosis but he needs a lot of help and the family were told that the only way to get funded help for their son was to get a diagnosis of autism. So basically, his school was pushing for this specific diagnosis in order to get the child much needed help. I don't think he's autistic but he certainly needs a significant amount of care and supervision and any funds received will be used to obtain this.

mha3484

Mon, Jun 17 2019, 2:40 pm

My oldest had a a really hard time in 3 year old play group. We thought it was a bad shidduch between him and the morah and we went to a psychologist who agreed with us. The issues only got worse in 4 year old nursery.

He is kind of a weird mix of ADHD, Gifted and some ASD traits. His yeshiva was convinced he was on the spectrum and put a lot of pressure on us to do a full eval in 1st grade. We did and it was very worthwhile but it came back no Autism.

We did not start getting him real help until he was closer to 5 and I have a lot of regrets about waiting so long. I really didnt know better but I look back now wishing I had done things differently. If I had to redo it I would have looked into floortime therapy more. I was not impressed with what I was told about ABA. I would have also started with a Developmental pediatrician earlier.

mha3484

Mon, Jun 17 2019, 2:47 pm

I just wanted to add. We could not understand why our sons issues were mostly in school and not any where else. I think as time went by we realized that he could do fine in small groups like a play date or the library etc but a large group likes school was what overwhelmed him. I learned I cant make comparisons between home and school because they are just too different.

amother

Mon, Jun 17 2019, 3:15 pm

mha3484 wrote:

Does a child need to be diagnosed as autistic to get floortime therapy through the BOE or insurance?

mha3484

Mon, Jun 17 2019, 3:18 pm

Where I live people get therapy privately via health insurance. Floor time is often done by OT's so I would look into if OTs who specialize in it are covered by the BOE.

amother

Violet

Mon, Jun 17 2019, 3:24 pm

My son's play group morah thought he was autistic. He's normal, but she's extremely rigid. He did well as so on as he was in a different environment.

aricelli

Mon, Jun 17 2019, 3:38 pm

mha3484 wrote:

Where I live people get therapy privately via health insurance. Floor time is often done by OT's so I would look into if OTs who specialize in it are covered by the BOE.

Good luck finding one!

aricelli

Mon, Jun 17 2019, 3:40 pm

amother [ OP ] wrote:

Does a child need to be diagnosed as autistic to get floortime therapy through the BOE or insurance?

My son doesnt have an official diagnosis- we got reimbursed nicely for his floortime therapy through insurance

FranticFrummie

Mon, Jun 17 2019, 5:20 pm

Would a diagnosis of PPD-NOS help him get services? It's a very generic label, usually given to kids who are to young for a specific diagnosis.

amother

Mon, Jun 17 2019, 6:24 pm

I’m not sure, I can look into it. It’s just so frustrating that it’s happening now in June. I doubt there’s any time to get these things done in time to register him into a different school for the coming year.

amother

Aubergine

Mon, Jun 17 2019, 6:26 pm

FranticFrummie wrote:

Would a diagnosis of PPD-NOS help him get services? It's a very generic label, usually given to kids who are to young for a specific diagnosis.

Do they still give that diagnosis today, or is it also under the asd umbrella?

amother

Seafoam

Mon, Jun 17 2019, 6:42 pm

fyi the CARS is not so in depth. my daughters autism diagnosis was missed twice with the CARS, and she got a dx with a more intensive workup. I would make an appointment with a top developmental dr today, the wait times are months long. Btw huberman is extremely difficult to get an appointment with (secretary was very unhelpful to me)

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