Is this normal to have a delayed diagnosis?

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My son is 12, and a psychologist is suggesting that he might be on the autism spectrum. He actually suggested Asperger's, but my son was severely speech delayed, so based on internet research I think it's more like high functioning autism. I have an appointment with the Marcus Institute in Atlanta, which seems to be the center for autism for the state of Georgia, in March for further evaluation, so nothing yet is set in stone.

I'll try to summarize his symptoms. Severe speech delay, requiring therapy starting at age 3. Testing and confirmation of learning disabilities in expressive language and inference in 2nd grade, and identification of ADHD symptoms at the same time. The thing that made me seek further evaluation was the fact that he still has hour long tantrums at age 12 and cannot be reasoned with when he's upset to get him to calm down, has no friends and complains that kids don't like him, and has some inappropriate behaviors that we can't get him to stop no matter what we do.

Since the possibility was raised, I have looked at his issues in a new light. Maybe his learning disabilities are more autism communication problems. Maybe the H of ADHD is autistic stimulating behaviors - I swore the other day I noticed what seemed to be classic hand flapping. I wonder how I have not seen those things before.

Anyway, I'm not looking for your opinions as to whether or not he is or he isn't - the Marcus Institute will tell us that, I'm just wondering if it is normal to have had such thing to be identified at this late age. Doesn't that usually happen earlier in life?

There are a number of members here on WP who were not diagnosed until our 40s or older, and then only because we happened across the diagnostic criteria online and immediately said "Hey - that's ME!"

It is often caught at an earlier age these days, since Asperger Syndrome was added to the Diagnostic Manual in 1994; prior to that, nobody was looking for it. Those of us who grew up in the 50s, 60s, 70s or 80s were just SOL. We grew up thinking our problems were all our own fault.

The higher functioning an individual is, the more likely it is that autism could slip under the radar. From what I gather, there are a lot of so-called 'Mental Health Professionals' who are so poorly educated regarding autism, that they wouldn't recognize it unless it was the most severe, sterotypical case of Kanner's. It's shocking, but apparently true, that there are still people out there with Psychology degrees whose impression of High Functioning Autism is that we should all behave like Rainman.

It's best to look for experts with plenty of hands-on experience with autistic individuals. So no, it's not at all surprising that your son could have made it to the age of 12 without anyone having that particular epiphany.

That all sounds plausible. The late diagnosis to me says either someone dropped a ball somewhere, or the social deficits part wasn't that pronounced until now, which is a good thing. The distinction between high functioning autism and Asperger's is not an important one (and it's been removed in the DSM V), so don't worry about that.

The overlap between ADHD and autism symptoms is fairly common too. There's all sorts of reasons a kid could be not paying attention at school. Autism also can go along with a tendency to focus excessively on small details, sometimes missing the bigger picture. Sometimes people with ASDs can have a hard time shifting their focus, so they can become obsessed with a few specific things. Often people with ASDs can have issues with anxiety as well, which can make it difficult to focus. Any of these could easily be mistaken for ADHD in a school setting.

The hour-long tantrums is a problem by itself - I've seen stuff like that in kids of all ages, including neurotypical kids. I wouldn't just blame it on the autism, but would rather encourage you to try to figure out (with the help of a behavioral therapist / psychologist) what functions those tantrums are serving. My default assumption when I see any kind of problem behavior is that the kid is missing an important problem solving skill, and so is instead relying on behaviors to solve the problem. So once I figure out the specific skill(s) that are missing, I can work on teaching them to the kid, so they can use them instead of the problem behavior. It's a bit tricky, but when it goes well, it's relatively painless.

I am wondering about your son's language skills. Schools may discontinue speech language therapy, but having trouble communicating with words would mean his only mechanism for communicating was behavior of some kind. And it's very frustrating to want and be unable to communicate. Also, kids can stim even if they don't have ASD. In a sense it might not be that important a distinction, as maybe what you need is a label. On the other hand, it's nice to get it right and not be confused. The fact that you didn't see these things before says more than the fact that he wasn't diagnosed before.

My child who does not have ASD engages in some very ASD like behaviors when her learning disability gets to her. It isn't ASD, but needs attention, and needs the right kind of attention.

A late diagnosis wouldn't be surprising at all, except that in most places in the US anyway a child with severe language delay is red flagged as being at risk for ASD so ordinarily I'd expect the professionals to have considered it. If you have the old evaluations and can look back, they should say how his social interactions looked, etc. so you can go from something other than memory. I don't think it's unusual to miss a child not getting services, I do think it should have been picked up before for your child. And even if they didn't say the word ASD, they should have comments you can look at to help understand. Because if he interacted normally as a preschooler and now looks not to be, I would question whether something other than ASD. But I'm assuming competent speech therapists, developmental pediatrician, psychologist etc. with experience with language delayed children. I don't think they should have missed it. If one does not have those services, I agree, ASD is easily missed by people who lack the necessary experience.

To add to what was already said: If your diagnosis was through the school district it may have been in their best interest, financially and otherwise to give your son the diagnosis that was the least encompassing. I don't know the diagnostic process your son went through; if he had an IEP or a 504 plan through which he received services, but they either did not test for autism to save money and effort or they were that clueless as Willard, stated, which is very possible. Some districts are more knowledgeable than others, some give more extensive and better tests depending on the qualifications and knowledge of those employed.

I agree that a speech delay these days should be an automatic flag to anyone doing a diagnostic, who is aware of that fact.

We did not begin seeking treatment until 5th grade. It is my understanding that the social demands around middle school age and the fact they never "grow out of it" (it being all the tantrums, oddities, seeming immaturity etc.) as people in my experience tend to say way too often, lead to seeking more answers around this age.

Thank you for your responses. It's kind of thrown me for a loop because early on, I was told by the speech therapist, who works with ASD kids, and by his pediatrician that he was NOT on the spectrum. Now a psychologist is saying he is. I'm wondering how we all missed this if this is true. But Eureka-C, I think what you say is what we are experiencing.

Anyway, thanks again. We don't have our referral meeting until March, and I expect there will be several steps after that before we get a definitive answer.

Whatever label is finally given, remember to keep your focus on who your child is and what he can do. And try to keep the school and professionals focused on that as well.

ASD is very confusing because it can look very different depending on the child and it covers a spectrum of traits. I know three boys who have more spectrum traits than my son, and their doctors did not dx them with ASD. One mom has gone to many doctors and each one dxes him with whatever they have expertise in. Another one of them teaches my son and has come to the conclusion that our sons must have the same thing, whatever it is. I bet there are thousands of kids in school who are on the spectrum but won't be dxd until adulthood.

As many from Wrong Planet will tell you, unless a specific dx is required for services you need, focus less on the dx and more on his needs. It looks like you are doing that.