Asperger's/PDD - What is the next step?

[Shelly in MD]

Hello! I am not sure what step I should take to find out if my 4yo has Asperger's. He is my 4th child, and there have been multiple issues over the past 3 years or so where I have noticed that his development is just not quite the same as the other kids. He can be delightful, but he is also very, very exhausting.

I have asked my pediatricians about it, first in Maryland (where we lived when he was 2 and 3), and just this fall here in Virginia. In MD, I asked if the issues I saw could be ADD related, and the pediatrician said that while he didn't think ADD was present, there was something there that he couldn't quite identify, but he said it wasn't anything to worry about in the preschool years. When I asked here in VA, I was told that "boys will be boys" and that they are just different from girls (my 8yo dd was with me at the appointment, but my older children, one son and one daughter, were not).

Over the holidays, my sil was spending a little time with my 4yo, and she approached me about the possibility of him being on the autism spectrum. I had not previously talked with her about it, and she has not spent much time with us in the past few years (we live in different states). While she does not have a medical background, she has worked for the past 3 years at an integrated preschool with 3-5 year olds on the autism spectrum, and she has gotten some positive recognition for her work. She felt like he would fall somewhere in the Asperger's/PDD range.

So, she recommended that I have him assessed by a neurologist or developmental pediatrician. I called my pediatrician this morning, and they are going to refer me to a children's rehab center that serves special needs children for an assessment. However, they said that I will probably not be able to be seen for 4-6 months for the assessment.

So my question is, where do I go from here? Is this the right next step, and what should I do in the interim? I am very, very frustrated by this child's behavior, and it does impact our daily life. Before talking with my sil, I would have said that he has sensory integration issues, but I can see where he has many Asperger's signs, and perhaps the sensory issues are just part of that. I guess what I am wondering is what to do, as a non-medical professional, to work with him for the next 6 months while I wait just for the assessment! I understand that there are limited openings for all kinds of services, but at the same time, this is my daily life NOW and I need help moving forward!

Our biggest daily issues revolve around his inability to play or stick with a task I have started with him, meltdowns if something he anticipates does not happen, being destructive (tearing up the other kids' papers, knocking books off tables), and pysically pushing and moving ALL THE TIME (i.e. he's not a lap sitter sort of kid, but when he does sit or stand near me he has to be pushing on me with his arm or body, or pressing his head against my shoulder or chest). He struggles to complete a task if I am not working right with him, and he interrupts constantly, even if he has another task to occupy him. He sometimes has angry outbursts, and I don't know if that is a need for attention or frustration or just anxiety.

For me, it is hard to know what could be a sensory or developmental issue, and what is him trying to get my attention as he is the youngest of 4! How do you distinguish between those different needs? :confused:

Thanks for reading my ramblings; any input would be appreciated! I can give more details on the behaviors we struggle with if that would help anyone point me in the right direction.

Thanks!!

Shelly

[LivingOutLove]

Hi, Shelly!

I'm at the beginning of our AS journey; my son is 5 and recently diagnosed.

I think you're on the right track with getting an eval, even if it is going to take 4-6 months...sorry about the wait! We first called our medical university with an autism center. They had a waiting list, so we called our reg pedi, who referred us to a dev pedi on post (we're a military family). We got seen in a few weeks...But it seems a wait is typical.

That's great that you're looking to be proactive about your child's needs! One thing you could do is create a visual schedule of the day to ward off meltdowns. I just used clip art to make one on Word. (I got that idea from someone on here :) )

The other thing you can do is get Tony Attwood's Complete Guide to AS, a very informative book!

I also like The Social Skills Picture Book (on Amazon). It has pictures of social situations, with the "wrong" way and the "right" way demonstrated. You talk it out with your child and then role play it.

My son's speech therapist is also big into role playing with Little People or action figures.

There is also a Yahoo group for families homeschooling aspies! It's very active.

HTH!

[Jan in SC]

You could always get an OT evaluation while you are waiting on the autism evaluation. If it is some sensory issues, then you could begin getting help a lot sooner. It would be a win-win option.

[chiguirre]

:iagree: about seeking an OT evaluation for his sensory issues. Even if he does have an Asperger's or PDD dx eventually, you'd still need to do a separate OT eval. In the meantime, check out The Out of Sync Child for some ideas you can implement now.

Here's the link to the Amazon page:

http://www.amazon.com/Out-Sync-Child-Recognizing-Processing/dp/0399531653/ref=sr_1_1?ie=UTF8&s=books&qid=1259626793&sr=8-1

[Misty]

It sounds like he may have a few signs, but I mostly see just ADHD and Sensory issues. Sometimes this is all you will see with Asperger's at this age though.. The social issues and rigidity, etc. will come as he gets older (if he does have Asperger's).

One important symptom that you can watch for now though.. He will not receive a diagnosis if he doesn't have this symptom.. They will ask if he is obsessed with a certain topic, toy, situation, or pet, etc... OR if he doesn't have an obsession, then they will want to know if he has any stereotypical motor movements such as hand-flapping, spinning, rocking, etc. This can be anything as long as he does it repetitively.. Especially when he's excited or nervous though.. One of my daughters (9) used to do somersaults obsessively and she would also walk in circles every time things got overwhelming for her. This is what they call "stimming". So look for these signs in your son.. If he has an obsession with a certain topic, toy, situation, or pet.... or does any sort of stimming (he has to have one or the other, but doesn't have to have both).. Then that points to Asperger's. Otherwise, he would probably end up with a PDD-NOS diagnosis or maybe even just ADHD.

My 6yr old daughter was diagnosed with Asperger's when she was five years old. Her obsession is dinosaurs and she also has a repetitive motor movement where she taps the walls and furniture in symmetrical ways. She also has severe OCD and there is a lot of overlap and confusion in what would be considered OCD and what would be considered an Asperger's obsession. My daughter received both diagnoses because her OCD symptoms were quite severe.

Come to think of it, it's probably a good thing that you have such a long wait. Will he be five years old by then? They usually won't diagnose Asperger's until closer to age five. If you take him in too early then they will either give him a PDD-NOS diagnosis or they will give him no diagnosis and tell you to come back in a year. They need to have a clear picture of how he does socially before they can diagnose Asperger's so this is the reason they won't diagnose it too early.

[butterfly113]

I understand your frustration with the wait! We have just gone through all of that. My ds is 9, almost 10. In first grade, he was dx with adhd. Yet even in K4, his teacher knew there was something, but she could not put her finger on it.
I don't know where in VA you are, we are in the southeast. If you are in the SE, you could also check out CHKD. We saw a developmentalist there, and the wait was long. Sometimes you just have to keep calling for cancellations, and you may be able to get in that way.
I would also agree to reading ASperger's Syndrome by Attwood. I am currently reading it, and it has been very insightful. There is a TON of info out there. That can be a good thing and a bad thing. WHATEVER you do, take one step at a time, and still enjoy your family. For a while this really consumed me, and was draining and exhausting... and I understand the shoes you are in. You just want to help your son, and are in the midst of it now... it can be tough! :-) If you have any questions, or just need to chat, you may pm me if you like. We are all in this same boat! (HUGS)

[Shelly in MD]

Thank you all so much! I'm doing some reading; I'm sure I'll be back for more insight! I appreciate the input. Thank you, thank you, thank you!

[newlifemom]

ITA with getting an OT assessment. My ds is an undiagnosed but is probably aspie. OT helped so much with behavior, speech and sensory issues. It was amazing. His OT also 'brushed' him. A lot of people think it is hooey, but I watched the transformation. Please know that for me and I would guess many others, 3-5 were the most difficult years. It gets better. He is only 7 1/2 now but can control himself a lot better.

I would not go to a neurologist. They aren't as much help and mine tried very hard to get ds into a school setting so he could learn, 'socially'. That would have been a mistake IMHO b/c an typically these children aren't 'bad' enough to warrant anything more than speech and OT and would likely fall through the cracks. KWIM? It is tough to say the least, but I am positive that loving on my ds and hsing plus trying to educate myself on this condition is why he is excelling at school right now.

Sometimes you can get services through the school district, but it is something you want to think about before you do.

HTH and :grouphug:

[Alessandra]

Since your sil works with AS children, I'd tend to take her opinion pretty seriously. As your sil may have told you, AS therapies can be very effective, especially if started early. BTW, I have heard lots of stories about pediatricians dismissing parents concerns as premature, when in fact the concerns were justified.

My only tip about getting an appointment is to make friends with the doctor's receptionist -- find out what day the next week's appointments are confirmed, then ask if you can call about cancellations. Also indicate that you would be able to come in at a moment's notice (if you can) if there is a cancellation. Keep calling -- it works.

You can also try a second appointment with another speciality, like a psychiatrist. Often one individual doctor will find a diagnosis, while another may not -- it pays to see more than one person.

[Night Elf]

I have had the worst luck getting any help for my son. I'm totally on my own and have a stack of books I've read. There is one I'm getting soon called Quirky Yes--Hopeless No: practical tips to help your child with Aspergers syndrome be more socially accepted.

The others have given good advice about assessments. My concerns would dismissed from the time I noticed something different about him at age 3. A new pediatrician wondered about Aspergers when my son had a bald spot on his head from hair pulling stimming when he was 9 years old. To this day, his hair is very thin on top which looks like an older man losing his hair as he ages.

I thought I'd give a few personal mom-help type tips to smooth your frustration and anxiety.

Jeffrey had meltdowns from ages 4 to 6. I learned to help him get to his room and help him with soothing techniques. He's always liked, and still likes, me lightly brushing his skin with my fingertips. It's just light enough to create goose bumps (or goose pimples as some people call them). I also gave him the items that were his current passion, such as his own personal dictionary, matchbox cars, action figures, Lego bricks. His passions have changed over the years, but he had each one for many months. Right now he lives and breathes video games, all kinds, all consoles, their websites, books, and their music.

I have always had to talk with him before we did anything. I talk very clearly and simply. I would let him know what would happen and what I expected.

Oops, mom is here. Gotta go. :)