Regression and Plateaus - Share Your Experience

Hi Amber123, and welcome to IAN.

I'm so sorry to hear you're going through this incredibly difficult time. It's not just the diagnosis, but the worry even before, and then the questioning afterwards. I so understand that. When my son was diagnosed, even though it was at a very reputable place, I still went to another clinic to have it done all over again. I just couldn't accept it until I heard it twice.

So many have been through this, and I hope you will remember that you are not alone. There is a lot of experience out there, among the parents who have walked this road before you, and many are willing to share and to help with information and advice.

I hope you will take a look at our Newly Diagnosed section. There, we try to highlight the main things to remember and focus on: http://www.iancommunity.org/cs/newly_diagnosed/

Autism Speaks has an Autism Response Team you can call or email. They are especially focused on helping newly diagnosed families: http://www.autismspeaks.org/docs/family_services_docs/FS_Overview.pdf

They have this wonderful "First 100 Days Kit" that can be very helpful, too: http://www.autismspeaks.org/community/family_services/100_day_kit.php

All my good wishes go out to you and your family.

Dear Amber123, I know the feeling all to well. You think you are in some state of disbelief and on the other hand you realize that yes, my son does have Autism. I am at the 1 year mark this month and still I have went through all the stages so they call it. 1st shock, 2nd, to disagree, 3rd, to cry and worry for him in his future. 4th to Study and gain as much knowledge as possible and the exceptance. Never give up HOPE! He is "IN" there somewhere you just have to be willing to be tougher than Autism is. It get's easier to navigate all the information once you ask everyone who has been there. Not easier to deal with or accept but just Remember, his Happiness is what is most important and what memories you make together are what he and you will both remember forever. Love heal's just hang-in there. Loving your son will help you despite everything and when he smiles remember that is better than any research there is. If I can help let me know.

My stepson has yet to be diagnosed with ASD. He is now 11 years old and lives with his mom, 2000 miles away. He visits us with his younger brother (age 10) every school break. I have the most contact with them both during the summer when they are here for 6 to 8 weeks. He is currently being treated for ADHD with medication, to which he usually responds well to.
I suspected ASD last year when many of his behaviors no longer fit the profile of just ADHD. His father concurs that it is a possibility but because he doesn't see an MD here and mom won't hear of it, he will not be diagnosed or treated any time soon.
He has been with us for about 10 days now and his behaviors, verbal and seemingly cognitive skills have regressed to that of a 3 or 4 year old. He constantly asks the same questions over and over and keeps saying "hi" in a baby voice (one he uses most of the time now)whenever he sees us. I am very worried about him as he is heading into middle school in August and there is no support for him there at home. I haven't heard or read of regression that happens for the first time this late in children. Could anyone give me some advice or point me in the right direction here? I want to help him as much as possible before he goes back home this summer.
Thank you.

Hi ineptinmate, and welcome to IAN.

I'm so sorry to hear about your worries for your stepson. It may be that he does have an autism spectrum disorder (ASD), but it would take an evaluation to know for sure.

What you are describing does not sound like classic regression, which takes place in young children who may acquire a few words and then lose speech altogether. It sounds more like the emotional immaturity that often comes with high functioning autism (and also the lack of social awareness). For example, I have a 14 year old with Asperger's syndrome who literally skips down the street - behavior that most high school kids would NOT do just because they know how it would be scorned by the other kids. He doesn't have that "social radar" and so skips because he's happy and feels like skipping - social consequences don't enter into his thinking even though he is very bright.

The baby voice may be a similar thing, and as far as asking or talking about the same things over and over: that is very common in children with Asperger's syndrome or high functioning autism.

It is likely that an evaluation would need to be done by an expert in autism, whether a team that evaluates autism or a psychiatrist. Regular MDs might not recognize the signs in a high functioning, verbal child who has been able to survive in a regular classroom without support. It's important to get some kind of evaluation just to make sure that whatever is going on - autism or not - is addressed. Children who have issues, yet have hung in there for years without intervention, can have a really hard time as social complexity increases and their peers leave them farther and farther behind - not academically, but socially. I do understand that families struggle over whether to "label" a child who seems so nearly OK, and may not want a diagnosis. The thing is, though, a good evaluation and/or diagnosis can really help guide interventions and help the child a great deal.

You may want to read our section on Asperger's syndrome to see if this profile fits at all: http://www.iancommunity.org/cs/about_asds/aspergers_syndrome

Even if no evaluation happens, if you are pretty sure that this profile fits your stepson, there are many books and websites (including ours) with information on how to work with a high functioning child on the spectrum.