For those who have ever doubted child's dx...

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Here I go again... Feeling very confused and at the stage once again of not being convinced about the DX that son was given due to his huge improvements.... and the fact that his pre school teachers are doubting the dx because he's a delight in the class room etc etc

So I'm interested to hear if anyone has had a re assessment done some time after the original DX? And what the outcome was?

I just can't for the life of me understand how a child that has been dx with mild autism can make such huge improvement to the point that there are no or little signs of it (for some months)?

I am actually going through that now. I had the original done at 3 and now my son is 7. For that reason, I am trying to find out if autism is valid, and what exactly are his issues that I need to focus on. So far they are keeping the diagnosis, but they will define it more when I finish all of my evals with the specialists. If you want to send me a pm that will remind me to contact you, I will be happy to let you know how my results turned out and what my experience is.

I too sometimes think he isn't, yet some days I am absolutely sure it is correct.

I hear what you're saying.

Mental health professionals make many, many mistakes...so learn to trust your own instincts. A mother knows her own child best. After all, you live with your children seven days a week, 24 hours a day. Mental health professionals do not.

As a child, I was diagnosed with Schizophrenia but, I did not have hallucinations, delusions or any of the classic symptoms of
Schizophrenia. In 2007, as an adult, I was finally correctly diagnosed with Asperger's Syndrome.

Children are growing and changing every day from the time they are born...so, it is very likely that your son was diagnosed
incorrectly.

While it is possible that your son was misdiagnosed, as autistics age, our symptoms become more subtle. I'm diagnosed with moderate asperger's, as of my last assessment two months ago. However, I can pass for normal.

I honestly worry about all this early diagnosing. I can't imagine anyone having been able to accurately diagnose my son with AS before he was at least 5, so you've got to wonder if the flip isn't also true. As in, AS kids can appear perfectly normal while young, so maybe non-AS kids can appear AS when young. There can be so many reasons for developmental delays.

I think what I would do is this:

Wait.

If you have no issues currently, then sit back and enjoy it. Be with your child, follow his leads, and let him develop as he needs and wants to do. He can start school mainstreamed; the label does not have to mean a thing if there doesn't appear to be a need for it to mean something.

Once he is 7 or 8 it will become fairly obvious if there is something going on that will need attention. You already have a diagnosis in place, and it can be called into play to serve your child's needs at any time.

If he can get through 3rd grade without any special help at all, and no sense that anything is different, then you can have him re-evaluated and decide if dropping the label is appropriate.

Enjoy your child, give him the best of yourself, and take a break for a few years from wondering if a label applies.

At two my parents were told I was too young to know if anything was wrong with me. Moving about didn’t get that attention it needed. There wasn't a consistent record. At seven they still knew something was amiss, but there just wasn't widespread knowledge. I got diagnosed at 25.

I would suggest not being complacent.

Thank you all for your replies.

You know, I'ts true, I'm with him 7 days 24 hours a week... But I only feel that he's different "sometimes"... not others... My gut tells me yes some days and no the next! So I dont have that strong sense of certainty, even as his own mother!.... I'm thinking up and down like a yo yo... Yes he has it... no he doesnt! It's driving me bonkas!!

Maybe I just dont know enough about the "Milder" end of the spectrum. I need to find a support network, where I can actually meet mum's and their children who are mildly affected, to gain more knowledge.

I do think that it can be a little over diagnosed, particularly when kids that age are trying to find their feet in the world... I mean, what's to say that DS signs were'nt bought about due to the frustration of not being able to communicate... or the changes that were happening in his world around and prior to the dx.

I think for his sake regardless I will hold on to the dx and wait it out like you say DW. Who knows what may happen later on when he may need extra assistance.

Thanks again... I must be driving you all mad by now LOL!

I think the advice to wait is very sound. We were never sure if there was something "wrong" with our sons, although my instincts told me 'yes' I was not at all certain, and teachers kept reassuring us that it was just a little social immaturity and nothing more. It wasn't until halfway through grade 2 that it was blatantly apparent to everyone involved that we needed an assessment. A year later, I am certain that the dxs of Aspergers and ADHD are appropriate, even though they have excellent days and even weeks, and are well-spoken, polite and affectionate and pass for "normal" to someone who has just met them.

I agree completely that by Grade 3 you should have an excellent idea of whether your son's current dx is correct. In the meantime just enjoy how your son is developing, be responsive to whatever needs come up and try not to worry too much.

There is some interesting research on "curing autism" and kids that were mildly autistic that 3 or 4 years later were cured or seemed to be off the spectrum. Your son is still young, but maybe he, too, after being diagnosed years later will be off the spectrum. It sounds like he is heading in the right direction. It's a small percentage, but I do think these kids do improve to the extent that they don't require additional services or a diagnosis to function in school or society. Be thankful your son is able to function so well with minimal issues. My son was okay in preschool because, well, it was preschool. It wasn't until kindergarten. Then his issues were glaring. I'd wait a bit.

equinn

Thank you all for your replies,

You are right... I just need to sit tight for a while and enjoy this good thing!

Who know's what is around the corner... His life has been pretty uneventful and no real changes so maybe he's just comfy in his little world at the moment.

Thanks again

Some children are highly self adaptive and some programs provide amazing therapies and supports that can allow for amazing progress, however non of this changes the underlying genetics and as the social demands increase at 5 or 6 anxiety manifestation often occur and additional supports, therapies and accommodations are needed.

The changes in my son once he got the proper supports and skills building were nothing short of miraculous and once the anxiety generated by sensory, social skills and EF differentials were properly handled. This still does not change the underlying characteristics; it just removes the overt manifestations that are often the simplest to use for diagnostic purposes. The good new is that if he is doing this well you have given him a great head start at dealing with the challenges he will face a the world gets more complex.

bookwormde

My K was in Childfind for delays (in all areas) by 17 months. By age 2 and a few months she was being assessed by the school system. She was making progress with Childfind (2x a week visits) but not very fast. We had already ruled out deafness (she ignored completely people calling her name, etc)

I asked for the public school system to test her for both mental retardation and autism. She got the "school label" of autism at that time ater they tested her.

She is 4 now, and has made DRAMATIC improvement. But I think it was due to nearly 2 years of special ed preschool (half day), and regular speech and occupational therapy.

She still has some "behaviours" like tearing up books (even board books) even tho she's read since age 3. And she'll fill up her mouth with juice, then spit it out onto the table and fingerpaint with it. And she gets "conversationally stuck" - she'll ask "what are you doing mommy?" a dozen times because she doesn't know the next question/statement to make. But largely, for most of the day?

She can Pass For Normal. Just like my sisters and I did (3 out of the 4 of us are ASD). We learned to Pass For Normal too. Doesn't mean the ASD went away, and with us it came roaring back in the teen years, but we learned how to PFN.

I would keep the diagnosis if I were you if it's a medical diagnosis. Once you reject it - good luck getting it back. If your child's "autism diagnosis" is only a school label, and they are doing well? You will lose it unless you secure a medical diagnosis. That's what we are in the process of doing now. And I know it'll take reams of paperwork to prove it - because she looks and acts so normal now, so I've been digging out all the paperwork. Luckily the special ed people have been very cooperative in this and are helping us.

I don't believe there is a cure, I don't believe you outgrow it. I think peope learn to adjust to it.

JMO

I was originally diagnosed with "classic" Kannar's autism, but later re-evaluated when I was 12 and my DX was changed to Asperger's. The reason for the change was because I was born in '81 and first diagnosed in '84, but Asperger's wasn't recognized by the medical community as a diagnosis until around '92.

Thanks for your replies

Great advice about keeping the dx... We are all on a good roll atm, and I'm extremely thankful for it... I do see some traits come out now and then... far and fewer between...though we are having some social issues atm.

I guess I'll have no idea about how he will be affected until he is that little bit older.

My gut tells me something is still there, but I just get confused when things run so smoothly.

Thanks again.