where can i find out about diagnosing autism?

[rhiannonwales]

Hi everyone,

I'm hoping that someone here can help me. Not long ago my family physician recommended that i take my almost 3 year old son to a specialist for autism. He feels that he might fall within the autism spectrum. I personally don't see it myself, but i recognise that i am biased. I know that there are many children and adults out there who truly do have autism, but i sometimes feel that medical professionals are too quick to slap an autism label on a child for lack of any other diagnosis.

So anyway, before i get myself all worked up, i wanted to ask if there were any online resources that i could find that have information about this illness.

And if there are any parents out there who wouldn't mind a few ?'s i'd apprieciate it

Thanks,
Sherrie

 

[BrerMom]

This is one link:

http://www.challengenet.com/~onemom/page11.html

and a page on the site http://www.challengenet.com/~onemom/page23b.html has questions that parents and doctors can ask/look for.

Good luck!

 

[SueM in MN]

Welcome. We have quite a few posters who have children with autism spectrum disorders. I'm sure some of them will help you out. I've got some internet links that might help until some of them post.
Link for Autism Society Organization
Link for Autism Society of America
Link to Books on Autism from Amazon.com . One of the best books about autism is Thinking in Pictures by Temple Grandin.
A link with a lot of other links
Good luck.

 

[billwendy]

Hi, you might just want to go to a specialist such as a special Developmental Pediatrician who will look at your whole child, not just certain parts of them. I work at duPont Hospital for children, and I know our specialists there do a very good job to try and rule it out as often as possible. There is a special test called a CARS or something like that the developmental pediatrician, psychologist or social worker may use, by interviewing the parents, that gives a score that helps to see if your child is on the autism/PDD spectrum. They also may use OT/PT/Speech therapists to look at your childs developmental levels. What is it that your pediatrician sees that is concerning him?
Wendy

 

[rhiannonwales]

well the doctor said that he was a little slow in his speech, and he started questoining me about his habits. I have recently looked at the test and i find that he only has symptoms in one of the catagories, and it says you must have symptoms in all three to be considered autistic or PDD.

The other thing he does is he has a habit of banging his head for no apparent reason usually while watching tv.

But on the other had he is the most social loving child that i have ever seen, strangers even comment to me about it. So now i think that perhaps the dr. jumped th gus a bit. I am still taking to a specialist, but more i think to put my fears to rest than anything else.

To all who responded, thanks, A LOT. And now i know, a little bit how all the other families here who go through this must feel. I would not wish this on anyone

 

[SueM in MN]

Well, if nothing else, you may get some help with the speech part and some insight into the other things he does. I thin k it's much better to have a doctor who is looking into anything that doesn't seem to be following the usual pattern. Many of us have the experience of telling the doctor that there is something not quite right and the doctor not wanting to do any evaluation about it. So consider yourself to be lucky to have a proactive doctor.
I could not agree more with the info about Developmental Pediatricians. The ones we have dealt with are awesome and have a lot more expertise than other doctors at looking at these sorts of things.

 

[NeverbeenB4]

Hi! I know it's hard to have someone even SUGGEST that your kid has something as serious as Autism/PDD. I have a 5-yr-old son with atypical PDD. I guess he's somewhere "on the spectrum". He never banged his head, although "self-stimming" is common. He is also quite social, but sometimes inappropriately, as in being too friendly to strangers. I am a Speech Therapist, so I picked up on my son's deficits when he was one. Since you're in NJ, I suggest trying a major University Hospital. Out here on LI we have Stony Brook, which has an excellent Diagnostician (Dr. John Pomeroy). Since you have web access, try looking up info on Asperger's Syndrome, which is kind of like Autism Lite (think Bud Lite). There's a website sponsored by Barb Kirby at U. of Delaware, I think it's called OASIS. There's also an expert named Tony Attwood. He's the Asperger guru du jour. There is a book called "Let Me Hear Your Voice" by Catherine Maurice that EVERYONE reads. You can find this stuff with a google.com search I am sure. I hope you're in a darned good school district. You will need that. Good luck on your journey. If you any any other specific referrals, post more on this thread. I'll get in touch if you like.

 

[s&k'smom]

Hi, absolutely check into your school district, they may have an autism specialist. Here is Mass to get my son a diagnosis he saw a neurologist and a psychologist who specialize in Autism. Don't be scared, he may "fall into" the spectrum but the appropriate education could really make the difference. I know how it feels to be scared and thats ok we've all been there. Know you have support out here. I would also check into your local support groups that is where you can really get some good information and hugs when you need it. Best to your family. Please post how things are going. I'm having a very hard time with my PDD son right now so I can also use support too!!

 

[momejay]

Call 18004autism or COSAC They can help get you the info you need. There are web sites too. NAAR... national something for autism research. Since you are in NJ try Robert Wood Johnson University Hospital. A doctor Mars is doing a lot of research.
Read everything you can & trust your insticts. We didn't have any problems with my son either at first. He just didn't talk by age 2. Now, he has been kicked out of summer school for aggressive behavior.
Definately look into Early Intervention or contact your school district you can get help with speech therapy, occupational therapy & behavioral therapy. Have a full evaluation done ASAP. (Neuro, psychological, educational...)
The sooner you get help the better. The problems don't just go away they get worse.

 

[nancycels]

billwendy! hi do u work at duPont in Wilmington, or at duPont at Jefferson? i work w/the dev clinic at duPont at Jeff! very small world!!!

I would suggest finding a developmental specialist or better yet a team who can evaluate your child. I know one of the things our team recommends is intensive speech therapy(more than u'd get just in an early intervention program), their suggestion is one on one therapy w/parents present. Often this is of significant help. It lets parents see how the therapist works w/their child and allows the therapist to model good ways to work with your child. Since you don't have a firm diagnosis, I'd suggest finding a univ. medical center, although I know we were very disappointed when we took our kids to CHOP(Childrens Hosp in Phila). They had slightly different problems, but also needed a team eval. We got excellent service at the time from what was Elizabethtown Hosp for Children, its now part of Hershey Med. Cntr. I'm not sure if they do the same type of eval, but there was an educational specialist, an OT or PT; a psychiatrist; a speech therapist; a medical doc; and a neurologist. Of course things may have changed significantly since then...that was 20 some yrs ago, and medicine just ain't what it used to be! But u ought to be able to get some good docs/and other professionals to do an eval for u. Feel free to post or email me at aol.com

 

[billwendy]

Hi,

I work as an OT on the developmental team in Wilmington. I work with Dr. Susan Stine and Dr. Rhonda Walter, both are excellent developmental pediatricians. What department do you work work in at TJU? I went to college at TJU and graduated in '90.

Wendy

 

[nancycels]

work with the Pediatric Neonatology Dept as a researcher, but part of our work is running followup clinic up here... i'm a washout from OT school! didn't really want to do the clinical part! decided better not to get into it if what I really wanted to do is research anyway. Started out working for Pediatric Neurology with Len Graziani, but now work with Jay Greenspan's neonatology grp(our developmental specialist is Dr Shobhana Desai). Its great seeing the kids that have come thru the NICU, some we didn't expect to have great outcomes are doing GREAT! I've done a lot of ECMO research, and a lot of the developmental research up here comes thru our department. Have to say I LOVE research!! Our psychologist is a former OT! Very small world! <g> We also have a nurse practitioner here who is fabulous! She's been doing dev. research for 25+ years so she has a really good handle on things! I have to say, I've used more OT theory in my daily life than a lot of people! Was jeff still doing MOHO when u were there? Those were the days! Do you do much research down there? OT cd use some excellent researchers! From talking to people in DC/NIH etc. they always moan about OT research quality! Keep in touch... u can email me at nancycels@aol.com. Nemours might not be too happy if i post my work email here! <g>

 

[teri]

rhiannonwales,
I agree with much of the above information, especially Sue's recommendation of one of my favorite books, Thinking In Pictures by Temple Grandin. But it really sounds to me like your child is speech delayed and maybe ?? has some other minor issues. Whether that falls under the category of PDD, or Aspergers, or other diagnoses is really irrelevant except when it comes to deciding who is going to pay for services... there is absolutely no reason whatsover to chase down a formal diagnosis for problems if they do not exist. Alot of kids never really get a clear diagnosis, or they get a whole collection of labels ( I call it Alphabet Soup Disorder ) which mean nothing to anyone but the specialists who treat them.

I like to think of Autism as being a collection of symptoms... if all of these are present then your child might be somewhere on the autistic spectrum. Which isn't the worst thing in the world. Many kids have one or 2 of these issues, but not all. You can deal with the individual issues with appropriate therapy, even if you don't have a diagnosis of autism. (Right, specialists? )

Problem with engagement -- the child does not initiate or sustain social contact.
Problem with reciprocity -- there is not the normal give-and-take in communication and interactions.
Problems with speech and language -- both receptive and expressive delays, not explained by hearing impariment.
Auditory processing issues -- in the little ones, difficulty with noises and sounds, withdrawal from new sounds or certain pitches of sounds. In big ones, problems with similar sounding words, discerning different noises.
Sensory integration issues -- hypersensitivity or hyposensitivity to touch, pressure, body position, heat/cold, physical sensations (the head banging is a clue on this one.)
Cognitive developmental delays.
Physical delays (sometimes).

That is just my list, the real experts have their own. I guess my point is, don't get hung up on the diagnosis. Break the problem down to its component parts, and look for the right kind of therapy for each part, as needed.

There are some excellent books available though www.Linguisystems.com... anything by Gail Richard is excellent, such as The Source for Autism. I also love her book on processing disorders... great stuff! My current favorite. Another good author is Stanley Greenspan... his book The Child With Special Needs is very good.

Chin up, trust your instinct, love your kid however it goes. {{{hugs}}}

 

[rhiannonwales]

well teri thanks a whole lot for helping me to trust myself.

He is slow in speech, but he understands everything you say to him and he will follow directions. He just doesn't want to talk. At least not much. My doctor says he should know 200 word by now and be able to use them in small groups. His new favorite thing is dinosaurs and he always watches them on tv and looks at them in books. He made me laugh he keeps saying " the dinos! they bite!" LOL He can talk, but just not as much as they think he should. I wasn't worried about it , all kids develop different, but the dr. put the fear into my head and now it won't go away.

As far as the head banging thing, he doesn't do it all the time and he doesn't do it very hard either. But perhaps i'm rationalizing it to make me feel better.


Thanks all of you for your advice, im going to the specialist in a week i'll post when i know more.

 

[s&k'smom]

Hi, I'll be anxious to hear how it goes with the specialist. I've been following your questions and being from another state I find it really interesting. Hope this helps but write down all your questions. sometimes I get anxious myself and want to tell so much I forget something! I also keep a log on my son every little detail and that can be a big help to any specialists you may see. Don't be nervous your doing a great job!

 

[NeverbeenB4]

Has your son has his hearing checked? That should be step #1 for all comprehensive evaluations. Not in the Pediatrician's office but in a booth with an Audiologist.

What "specialist" are you seeing? It is important who you start with. Some will send you on wild chases to a million other professionals. Then you will get a million (probably conflicting) opinions.

Good luck and let us know.