What's the first few steps of getting my son diagnosed?

K. Erin - posted on 02/22/2010 ( 5 moms have responded )

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I have been told my several ppl...even strangers that my son reminds them of other children with Asperger's. He has never been diagnosed with anything and was generally tested for autism when he was 2. They didn't want to label him and called him borderline autistic, I don't think that even sounds like a real thing. But, here we are, he is 8 now and in 2nd grade. He is the smartest in his class with the most behavioral problems. Outbursts and threats...I've never seen him freak out like this and am worried. I asked the school special ed dept for a full battery testing and was met with denials, excuses and plain old refusals. We are a low income family and qualify for state health care for our children, but I don't even know if they do this kind of thing. I just want to know what the first few steps are...I know step one is referral from medical doc to an occupational therapist...step two meet with occupational therapist...what in the world is step three...four...five...? If any of you can help me it would be greatly appreciated. I just want to know how to make my child's life fulfilling without medicating...without labeling really. But his teachers are at their wits end and frankly, so am I.

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Gina - posted on 02/24/2010

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I have been blessed to live just north of Atlanta, Ga, where the Marcus Autism Center is located. I found out that the only ones who can give a clinical diagnosis for the Autism Spectrum are: developmental pediatrician, psychologist, and psychiatrists. Usually, they undergo testing with both a developmental pediatrician and a psychologist to determine the full extent of "developmental delay." My son has a diagnosis of PDD-NOS which is, for him, a high functioning combination of Asperger's and Autism. My daughter, who is extremely bright, is also showing evidence of Asperger's. She understands perfectly, but has sensory integration issues, goes on a tantrum at the drop of a hat if something is out of her norm.

Unfortunately, in most states, the ones who can diagnose the spectrum only take certain types of insurance (the insurance we now have doesn't cover testing for our daughter). Most school systems, however, are required to allow testing. I'd write, call, and demand to speak with school board officials, superintendents, etc, in order to get testing. Once you get the results back, you may be able to go to the state for assistance.

Good luck!

Elizabeth - posted on 02/23/2010

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In regards to the school, request a complete evaluation in writing. When requesting the evaluation you want to make sure that you request that he is evaluated in all 8 domains. I do not remember them off hand but if you go to Wrightslaw online then you can find exactly what the 8 domains are. The school district does not have to evaluate a child unless it is put in writing. When you turn in the letter requesting a complete evaluation make sure you have them sign and date a second copy (Yes, bring two copies of the letter with you) so that you can prove you turned in the request. The written letter starts a timeline. This timeline is stated in IDEA and if the school will not evaluate they have to put in writing why they are refusing to evaluate. When it comes to the school please make sure you document, document, document.



As for the having your son evaluated for Asperger's or Autism, I would see if the pediatrician can refer you to a pediatric neurologist or a place like we have here called the Barber National Institute for a complete evaluation. If the pediatrician will not give you a referral call the state health care company and ask them what you can do to have him evaluated by someone who is qualified to diagnosis asperger's/autism and they should be able to help you. If you have a case worker then you could call him/her and they can steer you in the right direction.

Misti - posted on 02/22/2010

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I know how you feel. My son went through First Steps from 18 mths to 3 yrs and we could not get any answers to our question, "Is he or isn't he autistic." We asked the speech, occupational and developmental therapists and they could not give us an answer only because they were not allowed to do so. Also, pediatricians will not give you any answers; only referrals.



With that said, we demanded more answers from our pediatrician with what do we do next since he didn't diagnose and the schools don't diagnose, we needed to know what to do next. He gave us some names of local pediatric neurologists. We were able to get an appointment. The neuro met with us and our son. She then had to interview all persons in contact with him, teacher, therapists, etc. Ultimately, we received the initial diagnosis of autism, then communication disorder (he is non-verbal), then apraxia (he can't pronounce syllables). I was devastated but it has actually helped having the label. His education is set for his needs.



He is now almost 13, but as he got older, his behavior got worse. Yes, he is now on medication but now he can function, without it he could not. Before meds, we tried diet (GVCV) which did not work for my son.



I would look into the state health care to see if you can get a referral to a pediatric neurologist covered. The neuro would be able to tell you if it is indeed Aspergers.



I will say don't be afraid of a label. If there is something there to diagnose, having a label would be to your son's benefit. You would be able to set an education plan for the teacher to follow.



For more information, please review the following website: http://www.autismspeaks.org.

Geralyn - posted on 02/22/2010

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I personally would not rely on school district testing for diagnostic purposes. I would find an expert - clinical psychologist, developmental pediatrician or neuropsychologist who has expertise in autism spectrum disorders. Then see if your health insurance would cover it. The OT would be something to pursue concurrently.



You have to pursue school district testing though in order to obtain services at school. Make sure that you request special ed testing in writing. They won't act on a verbal request. Also make sure that you are documenting all incidents of behaviors or other behaviors. It is important to pursue things because it will only get harder for him as social demands and such become more sophisticated.... These children are also at risk of depression and anxiety as they get older.... Good luck!

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Kimberly - posted on 02/22/2010

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If the school district refuses to test then you are correct that you need to go to a therapist. After you get the diagnosis, whatever it may be, contact the school counselor and if you get no results, then go directly to the school district or the school board and present your case. They are OBLIGATED by law to give your son an appropriate education or pay for you to take him to another school that will. When it comes to the public school systems, you will find good and bad when dealing with special needs kids. DO NOT take no for an answer!

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