Hi, I'm New...Please Help!!

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Hi everyone, my name is Ali and I looking for support from other families/parents that have a child with Aspergers. My husband and I are awaiting the "official" dx from an evaluation that will be done this October for our 8 year old son. He has been to many other places and they have labeled with with pervasive developmental disorder (or so they say) however we truly believe he is an Aspie kid. As I mentioned we have gone to several places in the last four years and have not received the proper help for our son. It all started with our PCP asking us several questions regarding our sons behavior and mentioning if we had ever heard of Aspergers.Of course we never had, however she suggested we get an evaluation done to rule it out. So this is where our journey began. After speaking with a therapist and filling out paperwork by us as well as his preschool teacher at the time, she believed our son had pervasive developmental disorder. She suggested we have a full complete work up done for our son with a psychologist that specialized in Autism.

From there we waited about 5 months until he could have the evaluation. The evaluation was a complete mess. They basically spend an hour with us and asked us tons of questions, then they proceeded to observe our son for a hour and do a basic IQ test on him. When it came time to give us a dx, they had not even reviewed any of the paperwork (at least 10 pages we filled out)...they basically said that he did not show "ALL" the signs of Autism so they would not be giving him this diagnose. He said that since the DSM guidelines would be changing in the next few years and PDD-NOS, Aspergers and all the other categories of Autism would simply be labeled as Austism and their would not be any differentiated groups anymore that he felt he did not show enough signs to give him this label. He also outright told us their is very few patients he could give this label to throughout the year and he had to be picky. SERIOUSLY...what does that mean? Once we found out he had not looked at the paperwork, we demanded he score it right then and there. And of course the paperwork from us as well as his teachers came back at Aspergers. I was so confused and angry, I did not know where to begin. He did give us a summary later on and they dx him with severe anxiety. And then when they sent us the paperwork showing that they billed his evaluation as diagnostic code 299.90 (PDD-NOS) I was even more confused??? Sadly, feeling hopeless, we started putting our son in counseling. The counselor was wonderful and after several sessions, she said that it was imperative for us to have another evaluation done by a Psychologist who once again, specializes in evaluations of children with Autism.

So here we go again, we were directed down an Autism path. I guess my question for all of you is how hard was it to get a solid dx from a certified specialist? How old was your child? We are definitely noticing the older our son gets the more he is having his frequent meltdowns. He has begun lying on a consistent basis. His needs at times have become quite unbearable and he is going back to hurting me at times by hitting me and also hitting himself. He has all the classic signs of Aspergers, almost everyone one of them...but he seems to function on the higher end of the Spectrum.

After taking the advice from his counselor, we are all set up for another evaluation this October. This time I am much more prepared. We have been recording his voice during some of his meltdowns and I also have been trying to tape him using our camcorder throughout the day, however he hates the recorder and tries to act differently when it is on. It has been extremely hard on me and my family the last 4 years trying to figure out what has been going on with our son. We are truly at the point of desperation in trying to receive help for him as well as for myself, my husband and my other two children. I feel bad for saying this...but honestly, some days we feel as though we are losing our minds. I would love to talk to other parents that know how we feel...Somedays we just feel so alone. Is anyone from the Columbus Ohio region? Does anyone know of any great support groups? Thank you so much for listening, and I truly hope I can establish some great relationships on this forum for support and advice. Take care, Ali

Welcome to WP!

Hi Ali! Welcome to Wrong Planet. Check out the many interesting and helpful forums here. You are among friends here at WP!

Go to the General Autism forum here. There is at least one post there with links to online Autism/Asperger's tests that your son can take, or you can even fill out with or for him. Save the results, and print out several copies, one for your own records, and others to take to his docs/therapists.

The doc that was giving you a hard time is an idiot. It is not necessary to have every single trait or symptom of any disorder or disease, in order to actually have that condition. That is especially true of conditions like those on the Autism spectrum. No two people on the spectrum has the exact same collection of traits, and intensities of those traits. This is the main reason why it took so long for Autism spectrum conditions to be recognized for what they are.

I am sure your son and I share many traits, but not all of them. His Asperger's and mine are not identical, but are similar enough to be recognized as the same or a similar condition.

Unfortunately, too many psych docs still don't know enough about Autism spectrum disorders, and yet are being consulted for evaluations. They often do more harm than good, in their ignorance. You must definitely only seek an evaluation from docs that have experience with Autism spectrum patients.

Another problem is the government bureaurocracy. (Sorry, I have no idea how to spell that one.) These gov hacks are ignorant of much to do with medicine, and are also under pressure to pinch pennies, so they can give you a hard time. Don't put up with that. Keep pushing for a proper evaluation from a doc with Autism spectrum experience. Those without such experience are not qualified to evaluate your son.

Hope I've been able to help you some, and remember, you are among friends here at WP!

Welkome to WP

Mick

Welcome to Wrong Planet!

Thank you all for the warm welcomes...I really need to connect with others that are experiencing the same thing our family is on daily basis. I hope this will help alleviate some of my anxiety and give me a better understanding of my son. As far as testing goes...I did just take the Autism Spectrum Quotient (AQ) test the other day for my son. His score came out to 38 in which is stated he showed significant Autistic traits. I am going to try and take some of the other ones that were mentioned and will be taking them with me when we go for his second evaluation in October. The thing I don't get is how in the world can a psychologist tell me what is wrong with my child in only a hour and half of time that they spend with him? I am with him everyday and same with his school...if they do not take what the parents say into consideration...their is no way they can get a true idea of what my son is going through. The last evaluation the doctor said that he did fine in some areas and showed traits in other areas...however since he did not demonstrate alot of the behaviors during the time he was tested then he could not be dx as such. They said he cannot turn on and turn off these traits whenever he wants. I agree with that statement...however 1 and half hours is not nearly enough time to see exactly how he is...and especially since he did not have a meltdown during the visit...they said nope..he's not Autistic...

Did any of you have a therapist come to your homes during your evaluations? To see what your child was like in his normal routine? I think this would help in his evaluation. This is why I am trying to record him so they do not think we are crazy!!

You'd probably find many parents who can offer advice in the parenting forum

http://www.wrongplanet.net/forum19.html