Hi, New Here...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

My son was diagnosed autistic at 2 years old, I knew he was autistic at 18 months. What is it that you have against the PDD-NOS diagnoses versus Aspergers? The severity of his symptoms shouldn't indicate the diagnosis but number of symptoms will. They may be trying to do you a favor by giving him a PDD-NOS diagnoses because that label may make it easier for him to receive services, I don't think Asperger's always qualifies for services and that label is being done away with - it's all autism. As for lying and hitting other people I think most people here would argue those are not typical Asperger traits, Aspies tend to be painfully honest which can make us seem rude and don't like hurting people (not that there aren't exceptions!)

Oh, and regardless of where on the spectrum he falls this is a good place to find support. Welcome to Wrong Planet!

I'm not sure why you are pushing for an Aspie diagnosis vs a PDD-NOS diagnosis... the only real difference between them is language/communication issues. Kids without any delay in language/communication are Aspie, kids with a delay are PDD-NOS (**GROSS OVERSIMPLIFICATION ON MY PART HERE**) The services you receive should depend on the areas of need your child has, not the label. Aspie and PDD kids have a HUGE variety of needs.. not every Aspie or PDD kid needs the same services.

Having said all that, I would recommend a developmental pediatrician or a neuropsychologist. They should be spending several HOURS, at a minimum, with your child prior to diagnosing them.

Is there some service you need that requires the AS diagnosis?

If not, then why?
- it is difficult to be put through that testing over and over
- the resources are basically the same for AS, PDD-NOS, and HFA as far as books/websites/videos etc.
- the school often needs details about specific needs for an IEP and services should not be based solely on a diagnosis

Lots of children are diagnosed with PDD-NOS when they are younger and the gaps between their development and their peers is not as large. As they age, the gaps become more readily apparent or are narrowed by the right intervention/maturity etc and a more definitive diagnosis can be made. For example, many children's social difficulties are not apparent until about age 11 to 13 when peer social interactions become a huge part of development. Some people with all the AS symptoms are diagnosed with PDD-NOS because they had a speech delay as a child.

I do understand your frustration. My 11 y/o DS is officially diagnosed with PDD-NOS, ADHD hyperactive type, and Anxiety the school evaluation reported he didn't have the stereotyped behavior, restrictive interests, and displayed too good of eye contact. The psychologist reported relatively good understanding of social skills and behaviors. The difference was the environment IMHO. Either way... they keep saying he is not Aspie enough to warrant the diagnosis. Whatever, I have found it easier to explain to him using the books that explains AS, and it works for us. I have found the resources I need and I have the paper with a diagnosis to get the school to meet his needs. I could care less what box (diagnosis) they put him in, I just wanted to help him succeed and stop crying all day most every day at school.

It sounds like you are frustrated and venting. I am sorry you are having to jump through so many hoops and have found all the bureaucracy so frustrating. Believe me, many people on here have been there too. It helps to have a focus beyond what is "right" to what is "best for my child." It eases some of the inner tension, at least in my case.

BTW welcome

I would say this - it took us a significant amount of time to get a diagnosis and interventions that made sense (finally, Asperger's, but we thought bipolar, were offered Asperger's as just a label with no interventions suggested, ADHD, PDD-NOS, nothing wrong at all, "just a phase" etc. Took us until he was 10, we'd been looking for help since he was 3)

However, the counselor may be suggesting that he needs specific help for kids with autism. Counseling for a child with a communication impairment (whether that impairment be actual physical speech or just social language use) isn't really helpful until they address the communication issue. Autism and all of its related diagnoses (Asperger's, PDD-NOS, etc.) have a social communication deficit in common.

Did you go to a neuropsychologist or a developmental pediatrician? What was the assessment they did - an ADOS? I'm wondering if they are constrained by insurance or some other craziness - if so, I'd suggest shopping around for a second opinion. Are you in the UK (I know the rule for seeing a specialist are more complicated there.)

Check with your local autism society and see if they can help you find an expert who doesn't have some kind of silly quota.

In the meantime, see if you can get the different deficits diagnosed separately. Many children with PDD or AS also have a pragmatic speech deficit, which can be diagnosed and treated by a speech therapist. http://www.asha.org/public/speech/devel ... matics.htm Many also have difficulty managing or processing sensory information or difficulty with emotional regulation, and can be tested and helped by an occupational therapist: http://www.webmd.com/brain/autism/benef ... for-autism These are two of the big ones - the other therapies tend to focus on behavior.

Many of us have been helped by the e-book here: www.asdstuff.com

You may also want to check out the index stickied at the top of the forum for some posts collected under specific topics. Parenting style is important, but without knowing your specific needs it's difficult to discuss.

Hi Im an NT Mum of a suspected autitstic child, but we are about 3 years behind you!! Shes coming up to 5 and we are being passed from one specialist to another with no formal dx but no real explanation, we are just left hanging wondering if anything is ever going to be done. We also have to wait until October for the next appointment, I can see this is going to take a long time. Anyway I cant help much with experience myself but welcome to the group

Services aside, I figure you are looking for diagnosis (and the one you think is correct) because you're looking for HELP. Answers, support, advice, a way to go forward (instead of around in circles).

You might try this-- assume you are right, and start reading, talking, coming up with your own plan to deal with the child (and the situation).

If Columbus, OH is anything like northcentral West Virginia, this is something you are going to end up having to do anyway. If Columbus is anything like northcentral West Virginia, competent professionals are going to be hard to find (and incompetent ones can be worse than no help at all).

The "experts" who have looked at him so far, unfortunately, sound more like idiots to me. You don't want "help" from people who think like that. It will only wear you out even more, not to mention hurt your son.

If you can afford it, you might try going to Pittsburgh. I don't know how they are with kids, but after a year of trying (and almost dying, but I'll spare you my horror stories-- they're here if you want to read them) I finally got good help as an adult from the psychiatric department at Allegheny General.

*hugs* It's not easy. Spectrum kids really can drive you crazy-- I ought to know, I WAS a spectrum kid. You're not awful. You're human. You're also going to be OK.

I guess the way I wrote my post must have sound like my son was diagnosed with PDD...however this was not the case and this is why I was asking for support from all of you. He was only diagnosed with Anxiety officially. Only after going rounds with a local Aspergers/Autism Diagnostic center we were given this dx. Additionally a few months after his evaluation we received in the mail a Bureau For Children with Medical Handicaps Letter of Approval. This letter was explained to me that it was ONLY for billing purposes, so that the evaluation center would get billed and that it was NOT a dx for PDD. The following was listed on the letter

ICD: 315.39 Speech/Language Dis OT
ICD: 299 Pervasive Develop Dis
ICD: 315.31 Expressive Language Dis

I want to make it very clear that I am not looking to just receive a dx for Aspergers...I just want any type of dx under the Spectrum so we can get our son the help he needs!! ! WE ARE NOT looking for government assistance or anything of that nature...just support for him and our family. I guess since I have written this post I feel as though I am being questioned about my character and what is right for me and my son instead of support from those who are going through the same thing. Also, for the lady who mentioned that it is not in character for an Aspie child to hit...I am going to totally disagree with that statement. I have seen and heard other children with Autism who have had horrible meltdowns like my son and have turned to violence on themselves and others....

Thanks, Ali

It's important to remember when you post here that many of the posters are on the autistic spectrum themselves, and those of us who aren't have sort of adapted our language to suit the community. We tend to be blunt and direct without intending to be rude, and it's helpful if you start with that frame of reference. We also tend to speak directly out of our experience, and sometimes it matches and is helpful, and sometimes it's not and it isn't. It is helpful to use very precise and specific language when you are asking a question.

I think the above posts were not intending to second-guess you, but to get information as to why you were seeking a particular diagnosis, and what's going on with your diagnostician, so they could direct you appropriately.