My son has development delays and I have had the four hour test/screening to see if he is in the autism spectrum and got an inconclusive diagnosis (basically 'something is going on, doesn't trigger enough of the autism buttons - bring him back if he starts failing in school). The reviewer told me that their facility was conservative, if i had taken him to the other facility (that my insurance doesn't pay for) we might be walking out with a more definitive diagnosis.
He was four at the time and thankfully was already receiving assistance through Infant and Toddler services and did qualify for Early Childhood learning through the school system. He has made tremendous progress in both his speech and social skills.
He is 5 now and starts kindergarten in the fall. His IEP is up for review in November, but he will start kindergarten in special services. He is doing great and made so much progress most of my family thinks he is just like any normal boy his age, but I still feel there is something going on. One of the things that concern me is he is starting to pick up some OCD things .. has to reach over and touch a specific part of his blanket before going onto the next task or activity, can't keep his fingers out of his mouth and has chewed sores on them. He also can't stand still for anything, does constant little ballet dance moves even during swim class when he is waiting for his turn. He is very anxious about a lot of things and recently has started constantly telling me he doesn't want to die, wants to stay 5 forever so he doesn't die (and we haven't had anyone close to him die recently although he may have picked that up in daycare).
I want to have him tested/screened again but our insurance isn't great, so I'm debating - do I take him to a different full scale screening (a friend of mine gave me the name of a developmental pediatrician that screened and diagnosed her son) vs the facility i used. Or, do I take him to a behavior psychologist and approach it from that end.
Any mothers out there with similar stories? what did you do?
Do you think he might have some sensory problems? My son has some autistic qualities but doesnt seem to fall on the spectrum, according to all of his therapists. He has been diagnosed with sensory processing disorder which can exhibit a lot of "autistic" like behaviors. Maybe on OT?
We have a 5 yr old son who is PDD and has ADHD. We saw a geneticist, neuropsych, psychologist, psychiatrist, pediatrician, allergist, and a neurologist. The geneticist was awesome. They are so precise. It was by far the best result we yielded from all of the different docs we saw. We also did find out from the allergist our son has a corn and mold allergy. We have cut almost all of the corn and corn derived products from his diet and notice a huge difference! I don't think the "label" matters as much as he is receiving the proper therapy and proper medications. Ask around and see who is the best psychiatrist/psychologist in your area...We had to be open and ask LOTS of questions. Our pediatrician wasn't really on board at first but after receiving the reports from all of his therapists (PT, OT, SLP) he is beyond excited at the progress our son is making! We also saw a behavioral therapist and I thought it was kind of a joke and we had to pay out of pocket for it. If you are a mom with common sense and discipline then ( in my opinion ) a behavioral therapist isn't worth the cost of the sessions.
Hi,
I have one daughter that I knew something was up for at least 2 years or more. Her pediatrician said we wouldn't be able to diagnose for years which didn't make sense to me and I was worried when she entered school she'd have problems and I didn't want her to fall behind. So I kept pushing and finally when I mentioned her hands trembled in the morning she sent us to a neurologist. He diagnosed her with mild autism PDD. The preschool had done testing and had just gave her a language delay which never made sense to me cause she had a huge vocabulary. Anyway the neurologists diagnosis took precidence and she entered kindergarten shortly after that and they did more in depth testing and agreed with the neurologist. I would keep pushing and if you don't need a referral go to a neurologist they should have you fill out forms so you can note all those "odd" things he does cause that will help them diagnose. You want to get as much services for him that he needs. My daughter has improved tremendously over the years she's been in school and received services and right now she no longer has a IEP due to her improvement. She still has some issues as far as having trouble with reading and she has to work harder on writing too. Those things seen to go with Autism. Had I let it go she would have not received the services she needed to advance. As parents we have to push and sometimes fight to get what our kids need :)
Good luck!
L.
Hi, I was in a very similar situation with my son. I started noticing he had some issues when he was 2. He went through a wide gamut of tests and was finally given a provisional diagnosis of PDD-NOS, which the psychologist basically said that she was giving me to put in my back pocket if I felt that having an official diagnosis would make him eligible for more services.
Since we've started the whole process, he has made amazing progress. He was (and will be this coming year) in a wonderful preschool, but like you, I am hesitant to say that he's completely normal (whatever that really means) at this point. He had been receiving speech and occupational therapy through the school district, and I have to be honest that I don't know how helpful they have really been. However, I have insisted that the school district leave his IEP open, and we will reevaluate his situation once he starts kindergarten in two years.
All that being said, my opinion is that receiving an official or different diagnosis probably won't make much difference in the services your son will be eligible to receive. I don't know what it's like in Kansas, but out here the districts are so strapped that unless my son receives a diagnosis of classic autism (Asperger's and PDD-NOS are considered too high functioning), they will not qualify him for additional services. He clearly doesn't qualify for that diagnosis, so we are sort of stuck as far as additional free services go.
If you are able to swing it, I think that a behavioral psychologist might be more helpful to you. At the very least, you can make an initial appointment and talk to one about your concerns and see what they recommend.
For me, what's really helped is finding books about dealing with children like this. There are a lot of books about "challenging children" - kids who are tough but not diagnosable. "Raising Your Spirited Child" is probably the most well-known, but I also found "Quirky Kids," "When the Labels Don't Fit," "Taming Your Spirited Child," and "The Explosive Child" very helpful. "The Oasis Guide to Asperger Syndrome: Advice, Support, Insight, and Inspiration" was also very informative as far as resources for your child, even if he doesn't have an Asperger diagnosis.
Good luck. I know this is so tough to deal with, and it's hard when your friends and family don't really understand the depth and breadth of your concerns.
I used to work in ECI. I would start with the developmental pediatrician. You might also consider play therapy to see if the therapist can pinpoint what is causing those fears.
Then also as Beth suggested, ask for further guidance from the professionals as school. The school social worker might be familiar with play therapy, but likely not.
Please try not to worry too much. Your son may be picking up on that.
Good luck and God bless.
My son was diagnosed at age three with Autisim and Aspergers. I was completely in denial, I thought he had a few quirks, but nothing major. The diagnosis has made all the difference in the world. When a child is in public school and they just can't quite put a finger on what is wrong with them parents have a very hard time getting Special Education services of any kind for that child. Because my son has a diagnosis of Autism they can give him what ever services they want without huge amounts of red tape and paper work.
You have some valid concerns and the professionals will be grateful for your input and observations. I would go to the different facility. In the end he is your son, you know best, go with your gut.
Good Luck.
e
I understand your concerns, and I'll tell you that whatever happens with your son you are his biggest advocate. I have a daughter with Autism Spectrum Disorder (ASD) who also has Sensory Processing Disorder, ADD, Anxiety Disorder, learning delays, social delays, all as related to the ASD.
Trust your instincts. Hopefully it's not something as serious as Autism Spectrum Disorder, although it could be something similar or he could be low on the spectrum.
Anyway, you asked for where to take him next for an evaluation. You can go to any or all of these specialists for an evaluation and diagnosis: Developmental-Behavioral Pediatrician; Pediatric Psychiatrist; Pediatric Psychologist; Pediatric Neurologist. What's good about these specialists is that they can figure out what's going on even if it's not ASD.
