not ds, but autism spectrum

[Chester]

I know that some of you have first hand knowledge of autism and the autism spectrum family.

My question isn't about JT. It's about my oldest Cory. He was labeled ADHD at a young age. It never sat right with me, I've always felt like there is more to it.

Well now, I KNOW there is more to it. He can't keep his attention on anything, he is obsessive about things (like paper clips, staples, strings, pencil tops), socially he's "odd"~ he'll bring up some topic or some subject that is totally out of the blue and out of context. EVERYTHING is a struggle for him. This morning, I had to remind him to put toothpaste on his toothbrush. he's been known to get into the bath tub with socks on, etc. etc.

My newest opinion is that he's in the autism spectrum family. I was thinking PDD. One of his teachers is thinking Asperger's. We're both thinking OCD.

I've got an appointment with his ped this month and a developmental adolscent dr in November. How do you get a diagnosis for the autism spectrum?

He's 11 years old, it sure feels like we should be further a long by now. A part of me says getting a correct diagnoisis isn't that big of deal and another part says yes it is, then we at least have a base line of what to.

I feel the worst for him. I can't imagine the internal turmoil he must be going through.

Dawn

[ALLISA]

Dawn.....sorry to hear bout your troubles.....but maybe if you have an answer it will make things smoother.....

Erin had an evaluation done for just that reason.....

We contacted Developmenatl Medicine at our local Children's Hospital for her eval. It took 10 MONTHS of WAITING for an appt.....I AM NOT KIDDING !! So the earlier you call .....the better.....

If you are unsure where to ask.....I would inquire with Special Ed dept at school ( I am sure you have plenty of contacts) or I called a parent resource at our Downs Clinic at the Children's Hospital and she direceted me to the right place.....

Her "evaluation" consisted of a bunch of developmental questions for me to answer, observations by clinical Psychologist and therpaist and their own "testing". I am unfamiliar with the diffenrte tests and their names.....A probably knows them all by heart !!

They gave her the dx right after our first meeting with them based on their observations, feedback and answers to the questions.....
Good luck and keep us updated !!

[momofrussell]

LMAO Allisa.. I don't know specific testing names!! I suck with names of tests! LOL

Yes, find a psych well versed in ADD AND ASD. Chester, Kevin and i have never truly bought the ADD thing with Regan. Two different docs have DX'd her with that.. but she truly has alot of Asperger quality about her. Even our inhome gal for Russell and his Austism noticed what we notice.. and our thinking it's Aspergers. I do know some chidlren DO get DX'd with ADD AND Aspergers... or ADD/ODD.. like Regan did. Regan IS social and can keep friends but all the other stuff with Aspergers is Regan.

And I am like you.. it's not so much the DX.. it's what to do with the DX and Regan. So... I'd start with a good, knowledgeable doc and go from there. Let them know something isn't sitting with you. Write down your observations and take them in. Like Allisa, we filled out a many page form, questionaire for Russell and he had observations done by the doc and got his DX. Same with Regan but we all truly thought it could be ADD so we did the ADD forms and got the DX. I kept telling the docs other things but they felt she was ADD. To this day I am not buying it! LOL Maybe I am in denial though

getting the DX is like getting an ADD or any other DX like this. And has the school eval'd him? I would make sure the school does some functional assessments on him too. They can check for LD's, Auditory Processing stuff, Autism, ADD, ect.. so ask for ALL the tests. Oh, and if you ask the school make sure to put your request in writing Technically it should be

good luck.. and let us know if you need anything else! We just got Regan's progress report card today.. I think we are headed down hill now I knew this day would come but wasn't ready just yet. Time for us too to maybe check in with a doc!

A.

[Chester]

Thanks to both of you!

I think A, answered one of my biggest questions. I've been filling out all the PILES of forms for years and years it feels like. I was wondering why the forms have never picked up on anything other than ADHD....I bet they are ADHD forms, I bet we get a different pile of forms for autism spectrum?! Maybe not, maybe. Guess I'll soon find out.

Good Luck to both of you too! I will keep you posted.

Dawn
I think it's RIDICOULOUS that it take SOOOO long to get an appointment. Something in the system isn't working right!!

[momofrussell]

Yes, Chester, I think since we verbally thought it was ADD, the places we went to had us fill out questionaires on ADD only. In fact it was almost too easy at the first doc but he is well known in this field here in St Louis and does many talks on it, we didn't think twice.. but again, it was almost too easy. We then saw another doc that specializes in it and she did a more in depth approach but it was still ADD focused and she came to the same conclusion. I also think Regan doesn't open UP alot and I tend to look like the 2/47 complainer so we don't get farther along then maybe we should. Over the few years with it, I have taught Regan to open up and we have opened our eyes to who she is, what she can handle, ect.. and it's helped us realize maybe there might be more to it... it's that or we haven't learned to accept it yet, which could be VERY possible

A.

[kerri]

There's a great book called The Out of Sync Child, by Carol Kranowitz. It talks about sensory processing disorder. I have often recommended it for parents of kids who don't seem to fit their diagnosis of ADHD. There's also a lot in it about Autism spectrum disorders. I hope it helps.

[Jenn]

A...our kids are sooo much alike it is crazy...
Personally...here, there is not a person that will even entertain the fact that Courtney might have both. It drives me insane...so, until we move...I don't think we will get anywhere. Nicolas...poor Nicolas....lol
We have been through it with him...he is awesome with adults...too bad he has to interact with kids. Now he gets along with younger kids, unless their name is Austin...but he is so far behind socially than the other kids his age. Smarter than a whip.

I feel for ya! Hopefully you will have better luck than us.

[lespring]

My now 18 year old was diagnosed on the Autism spectrum when he was 3. He was also EXTREMELY hyperactive, and had some sensory issues as well.

At 6 he spent 2 months inpatient at Mayo Clinic for observation so they could try to figure out what in the world was going on. At the time I was also questioning Tourette Syndrome because he had some definite tics. One of the components of Tourettes is extreme OCD. But they said no, he didn't have enough combination of tics to have TS. Mostly he just had some facial tics, and a sniffing one.

As he got older, he became more difficult. Diagnosis was changed from PDD to ODD.

In his teens everything exploded. He became aggressive and verbally abuse. His OCD became worse, only we didn't know it because he was smart enough to hide it. (he has an IQ of 180) He was assessed at 14 and was diagnosed with a tic disorder (but not enough to qualify under TS, and nothing that you would notice if you didn't know him.) OCD, and "Autistic tendancies" because he just didn't have enough to fit under any of the categories. Tyler cannot make eye contact, doesn't like to be touched, etc.

At 16 he came to me one day and said he needed to see a neurologist. He told me is tics were getting worse, but that he was hiding some of them so we wouldn't see. AND...some of them were in his head. One wee later he attempted suicide. When I brought him into the ER, the first thing the doctor asked me was, "Has anyone ever said anything about Tourettes?"

We spent 3 months watching Tyler go downhill. His 17th birthday came and he was just not making sense sometimes. Talking to himself alot. In January of 2006 he was finally diagnosed with Paranoid Schizophrenia, Tourette Syndrome w/severe OCD. He spent the next year in a residential treatment facility and was just discharged at Thanksgiving.

So the whole point of my post is this...if you think they're missing something, keep pushing. I KNEW when Tyler was 5 that he had Tourettes. I KNEW they were missing everything I was seeing because it was so subtle. What they don't like is when parents come in having already diagnosed their child and are coming only to have that diagnosis confirmed my a medical professional. But with the internet, and the access we have to information, people are alot more medically savvy than they were even 10 years ago. Go with you gut. If you think they're missing it...keep pushing.

[Chester]

The adolescent developmental Dr. we saw was awesome, just very thourough, which means a TON of time. This Dr. is well known and versed in our area, so he's got some extra strings he can pull. He put us on the fast track. We have already seen a geneticist, which we're waiting for my son's karotype. That alone takes 6 weeks. The geteticist got "overly" excited (IMHO) and already asked if I would sign photo releases if her thoughts are correct. She is thinking XYY. Which doesn't do much for us, he sure could have "autism" and OCD.

We left the gentisct with an appointment to see her again in one year and to see the ped developmental Dr. in July. We go back to the adol. devel. Dr. in a few weeks.

My boy is a puzzle that keeps getting more and more pieces.

Leah, how is Tyler now? Mental Illness is something so so scarey to me. I just don't know much about it.

Dawn

[CC]

Dawn ~

Christopher was not dx till just recently well, it was in August of 2006. Colin and I always knew something was just not the norm as others with DS KWIM. Not sure what the norm with ones with DS really is but from all I had seen and heard Chris was not.

Chris was seen by many over the years and they just always said "its due to the DS"

K, long story trying to keep short we were sent to a Dr. at the Children's Hospital of Philadelphia, she is supposed to be the one that knows lots about dual dx in ones with DS. They did the regular physical exam on him then talked to both Colin and I, observing Chris the whole time and then talked to Chris. They performed the ADI-R (Autism Diagnostic Interview-revised) Just to give you one of the examples of how he scored, as there were different categories. But He scored 21 in a category of qualitative impairment in reciprocal social interaction, where the cutoff for autistic spectrum disorder was 10.

For us it was just finding the piece of the missing puzzle we knew was always there and let us understand why some of what we were doing for Chris was just not working Chis is very OCD which he is on meds for. Meds was something we truly were hoping we did not need to put Chris on BUT seeing how they help him, for him I am only speaking, I am sorry it took so long to figure this out.

Anywho just thought I would share with you.

CC