Psychiatrist called trying to diagnosing autism "a label"

Faith - posted on 05/22/2009 ( 6 moms have responded )

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He said it wouldn't change how he's treated and counseled. He said they have him down as ADHD and social phobic and mentioned something about ruling out Asperger's?! He said I could pursue the testing if I wanted to, but he didn't see the significance in that.

I am upset because the only time he has ever had a psych eval was in the 1st grade. He has an IEP, but they've been using teacher input for the every 3 years evaluations based on his LD in reading. I guess this explains why we do not have or have not pursued a diagnosis yet. I keep reading about high function autism being masked. I'd say so. Yet, when calling around, I get asked why he isn't already diagnosed. grr.

Looks like I have a 6-12 month or more process ahead though due to waiting lists and state budgets. Even the medical universities are booked for 6 months solid. (Trying to find a developmental pediatrician.)

I am also going to have to retell the school district to evaluate him again. He's in the 7th grade and his last/only eval was 1st grade, 1st time (we held him back to repeat 1st grade after starting 2nd grade even with an IEP, he was in way over his head.)

The only reason he even was "placed" in 1st grade from Kindergarten was due to his extreme intelligence in math. They placed him so that 1st grade would be the better year to repeat if needed. They were amazed at his math skills since he was doing touch math in 5K and no one had taught him that. Of course, I had never heard of it and he didn't know it was touch math he was doing. Even now, he feels like he already knows new math skills the first time he sees them. He just struggles with the "classroom" aspects of math, i.e. taking notes, homework, etc.

I digress. My original topic question: Isn't it important to get the Autism (high-functioning) diagnosis to get other needed services he should benefit from besides a lot of pill-popping? He takes 3 pills in the a.m, 1 after school and 5 at bedtime! My mom said it's like asthma, doctors will treat it, but won't diagnose it because it is a permanent, life-long diagnosis?! Why would you avoid an autism diagnosis like that?! That confuses me. It's not something you grow out of, is it?

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Christina - posted on 08/15/2011

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A lot of people out there are afraid that if their child has a diagnosis, such as autism, ADHD, etc., that they will be treated differently. Like it or not, there is still a big social stigma attached to autism, and a lot of preconceived ideas. Yes, it is lifelong. It can be life-changing to know that the things your child deals with on a daily basis may not be things he or she grows out of. We parents, when our children are diagnosed, have to deal with some pretty jarring ideas. Our baby may not be able to get married, go to college, or have the kind of life that we dreamed up for them while they were still in the womb. They may have to live with us or have a support person until they reach senior status. A lot of times, we see the negatives associated with developmental delays or behavioral disorders, and it is hard to see the other side of the coin. However, if your child IS diagnosed, it is far easier to understand WHY he or she reacts to certain things in a certain way. It is easier to know where their strengths may lie, and it is far simpler to help them when they are having a rough day. My daughter was diagnosed with an ASD at the age of four. With that knowledge under our belts, we were able to prepare her for situations that would normally mean a meltdown. We were able to get her an IEP in school. We could identify triggers and either remove them or get her conditioned to them. Because of getting the diagnosis, we have been better able to prepare our daughter for LIFE. Yes, she has autism. Yes, it makes her world different. Is it a label? Maybe. But I look at it kind of like a care label in a garment. If you have a wool sweater, but you've never owned wool before, and it has no label, you throw it in a washer and it's ruined. But with that little care label, it stays beautiful and just the way it was meant to be, and you know how to take care of it.
My advice? Switch psychologists, because this one obviously has an issue with autism diagnoses. It's people like that who continue to perpetrate the ignorance about the disorder.

Julie - posted on 08/12/2011

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No one ever had a problem telling me my daughter was autistic. Just her paediatrician was pretty ignorant on psych problems and just labelled every kid with ADHD and didn't bother looking into any deeper.

But then again, she's a medical doctor, trained in medical problems with children. So I can see why she didn't know much about developmental disorders.

After seeing several developmental disorder specialists, ADHD was ruled out and autism unfortunately very much confirmed.

But no one was reluctant to ever voice their opinion - they always told me straight up their opinions.

As for professionals and labels... some professionals are just weird. They say the don't want to use labels - but are happy to label people basically behind their back. They won't put it on forms to help people get funding for services etc, but on reports that clients/parents don't see, they will happily put half a dozen labels - and if clients find out because they've put on a wrong diagnosis, all hell breaks loose if you try to get it removed.

Been there, done that, don't want to ever go through that again.

But all I can say is, don't ever trust a "professional" who says they don't believe in labels. Either a person has a disorder or they don't. If they have the disorder, having the label is a necessary evil to get treatment and assistance. The only time it can truly be bad is when someone has been mislabelled.

Jen - posted on 01/07/2011

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When my daughter was first diagnosed, we faced a similar problem. Her pediatric neurologist (for whom we had to wait 5 months to see) flat out told me that she did NOT have autism. She had a speech and language disorder. One month later, we visited my dad who is a retired pediatrician. This is his only grandchild. He watched her quietly for a day, and then invited us to his home for dinner. He said, "I've practiced for over 35 years. If I want to interact with a 2 year old, I can. I cannot interact with my granddaughter. I don't know why they're not telling you this is autism. But when I see her behavior and the way she interacts, I can tell you THIS is autism."

We wrote a looong email to our daughter's neurologist, and he said, "Of course, it's autism! I thought when you asked me if she had autism that you meant classic or Kanner's autism."
He lied to cover his ass. The reality was/is that there is a stigma attached to autism, and no one wants to be the first to break it to the parents. It turned out that our neighbors and friends all suspected she had autism, but no one felt able to say it to our faces.
When we went to our first IEP meeting, we were asked if we WANTED to put autism on her IEP. I was baffled. Why wouldn't we? We were told that some parents don't want the label on an official record. I said that was crazy -- if my child needs services because she has autism, then of course, I want that on her IEP. So she can get the services!
By the way, we tried all kinds of diets, vitamin regimes, and medications. The best and only treatment I would recommend is ABA/VBA and in combination with RDI therapy. My daughter is now 9 years old, and our attempts to get honest answers were from the age of 19 months until she was two and a half. Best of luck.

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Get an advocate to go to any IEP meeting, you may look them up on line, and they do not cost any money. They aid you in helping and making a positive IEP. Wrights Law on line will also give you many good ideas. I have the book, and they send you information, but I still do not go to an IEP without an advocate.

Aimee - posted on 05/24/2009

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By the way, I didn't mean "get the same money." I don't get any money, but these services are paid on my child's behalf. Also, a script from the physician is needed for most things, but it is wonderful and I'm so happy it's available! The ADHD medications which really work for one of my twins and health co-pays are hundreds of dollars per month for my family of five and I know it's way worse for a lot of people...

Aimee - posted on 05/24/2009

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I have to tell you that I've had trouble believing my twin boys were PDD, which is in the autism spectrum. I had a problem with labels and was resisting. Guess what? Now that I've accepted it and heard it from different professionals and have looked into it I have found out my son is getting services automatically regardless of our income!!!

In MO through our regional center my son is getting $300 this summer for summer camp, on a waiting list for $1500 per year for life to receive services that he can really use. OT that's not available through the school district, ABA, and I think it's called RDI, and respice care should I need that. I have twin boys at almost eight that if I leave them without supervision they get into dangerous situations. By alone I mean playing in our yard together for five minutes outside I have seen sparks under our 500 gallon propane tank and ran outside and grabbed the black fireplace starter thing from them. I've had them fight over the stupidest thing and one took a big stick and hit the other one in the face.

They are usually the sweetest, most loving boys and generally don't have that type of behavior but need constant supervision because of their unpredictable choices when unsupervised. Anyway, I've just started in this area and should get the same money for the other twin who is high functioning. I wish I would have gotten the diagnosis years ago. Through our Regional Center I am taking Special Education Basics, The IEP Process, and Assertive Communication (in dealing with the school district.) They give these classes for free when your child falls under getting approved through our Regional Center. It's unbelievable - diagnosis can alway be changed as I've discovered through my reading, or misdiagnosed, because so many of the syndromes can have the same symptoms, kids get older to communicate better and we seek out more specialized doctors that can tell the difference and have the experience between PDD-NOS, Rett's, Asperger's, Fragile X, it goes on. I hope I've been encouraging but regardless of a label there might be things out there you are not aware of so check it out!

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