Almost 5 Yr Old with Asperger's Syndrome???

Hi C.,
I recommend contacting FEAT (Families for Early Autism Treatment) at ###-###-####, www.feat.org . They will send you a Parent's Handbook that gives you a list of all kinds of resources of where to go for evaluations, diagnosis, treatments, etc. and will also help you advocate for services for your son through the school district. They have parent empowerment group meetings each month, where you learn more about the diagnosis and how to best help your child. I am not a doctor, just a wife of someone w/ Asperger's and a mom of a child w/ Autism and another child w/ ADHD, but what you describe does sound like a textbook case of Aspergers. Which tests/evaluations has your son had? He should be evaluated on an autism rating scale (ADOS, GARS, CARS are common ones used), also on adaptive skills (ABAS is the one I am familiar with). Sometimes the school district will just do cognitive/IQ testing which isn't enough (your son is obviously very intelligent, from what you wrote). I would also recommend getting a book or two and reading up on Aspergers/Autism Spectrum Disorders, as you will be the most powerful force in your child's life, and the more you know the more able you will be to give him the help and support he needs. The three books that FEAT recommends reading first are:
Facing Autism, Giving Parents Reasons for Hope and Guidance for Help, by Lynn Hamilton
Autism: Asserting your Child's Right to a Special Education, by David A. Sherman, Special Education Attorney, www.aboutautismlaw.com
A Parent's Guide to Asperger Syndrome & High-Functioning Autism, by Sally Ozonoff
Once you receive the FEAT Handbook, it will give you a longer list of recommended reading, this is just the starting point. I hope this helps; feel free to email me if you would like.
Best wishes,
A.

Hi C., I just want to say you are not being oversensitive to your son's difference's, in fact, I think you are doing what you should be doing. Professional's are so quick to label children into a category and diagnose them. He doesn't sound adhd, my son who is 3, is all over the place, he is a 3 year old boy, he is supposed to be. My nephew's who are 6 and 9 are very active, and they are supposed to be. I think a lot of what we label is actually normal behavior, we just think it is out of control. Your son sounds like he does have some type of disorder, but keep doing what you are doing and questioning what they tell you. I would continue to have him tested as he gets older. Be vigilant, ask questions and don't stop looking for the correct diagnosis. Good luck

Hi C.. I'm the mom of 6 kids, two of which are on the spectrum. First of all, call the Warmline Family Resource Center at ###-###-####. It's a non-profit organization that's ran by parents of special needs kids. They can give you further ideas of where to turn and some of them have kids in the SJUSD. Seeing a neurologist would be great idea and also an assessment by Alta CA Regional Center. Please call the Warmline and have someone explain all of this to you. Otherwise I'll be writing a book here. LOL

L.

Hi C. -
Let me begin by saying that I have a somewhat special needs son as well - he is four. When I brought my concerns to our pediatrician, he referred us to a child neurologist. Im not sure if autism is in the neurology spectrum, but ask your pediatrician they should be able to point you in the right direction.

Hi, I read your message and I hear a theme in the message: you are concerned about the diagnosis, or label, for your son's behavioral profile because of your basic concern that he will receive the right kind of assistance as he goes through school. In short, it sounds like you do not want him to be mislabeled or misunderstood. Labels aside, it sounds like your son has some key differences in how he relates to peers and adults and these differences sound like they are primarily in the domain of social language/interaction skills. I understand that when your child is not 'labeled' as being on the autistic spectrum it can be difficult to gain access to the services that may benefit him, especially with regards to navigating the school setting. If your son has visited the Mind Institute, it would seem to me that your son has probably undergone quite comprehensive assessment, including one by a Speech-Language Pathologist. If so, I am curious what the outcome of the social language measures were. SLPs generally give social language scales (questionnaires/observation based assessments) and tests of social interaction skills to determine where the child falls along the continuum of 'normal' or typically developing peers. If your child does receive the diagnosis of ADHD, then he will be eligible for services through your public school, so it may be appropriate to refer him on for assessment with the SLP at the school district. It will be important to observe whether the differences in social interaction especially in the school setting, will cause him challenges with relating to peers, making friends, or maintaining relationships. Many parents in your situation will seek out social language groups for their children so they can learn the necessary higher functioning social skills such as maintaining an interaction, making conversational repairs, negotiating skills, and compromising skills. I do wish you the very best in discerning what the best route is for your son. K. T.

I would suggest taking your son to a geneticist to pursue possible testing. I have a 6 year old son that has a very rare genetic disorder. Many of the symptoms you have described can be applied to children with genetic disorders. The geneticist will look for physical features that point to a genetic disorder and they can order a blood test that can pin down the exact problem area.

I know its a scary thought, but if they find nothing, then at least you know its not genetic. However, if they do find something, then you have a diagnosis to work from. I know from personal experience that you won't get very far with San Juan Unified unless you have some sort of diagnosis and once you get one, that will open up a realm of therapies and intervention that can help your son develop to his full potential.

Feel free to E-mail me if I can be of any help.

No, I don't think you are being too sensitive AT ALL! You are just trying to do what is best for him. I have a friend who is going through something very similar with her son. No one could quite come up with a diagnosis. She has recently made some big changes in her son's diet which have resulted in some very poitive changes for him.

I see a lot of great advice to you from other moms and I think you should definitely look into some options with different agencies. Unfortunatly, many of them are not aware of how food allergies and intolerances can affect behavior. If you haven't looked into it already, I would strongly suggest reading about a gluten-free, casein-free diet. I won't go into it all here but it works very well for MANY children like yours who are high-functioning. I can speak from personal experience when I say that removing these things from the diet can change the way the brain functions and the way a person behaves. If you would like some articles on the subject, feel free to contact me.

Here are a few:

1.The second story "Saving My Daughter" is good.
http://www.glutenanddairyfree.com/ourstories.html

2. A good book:
http://www.amazon.com/gp/reader/1885477449/ref=sib_fs_top...

3. Some children who exhibit the personality you are describing have celiac disese. It is genetic which is why several people in a family may have autistic tendencies.

http://www.celiac.com/articles/21635/1/Gluten-Celiac-Dise...

4. Just go online and search "autism spectrum gluten" and you will find more than you'll ever need. The autism spectrum covers everything from sensory disorders to ADHD to Asperger's up to full-blown Autism.

5. Check the website for symptoms of Celiac that your son or people in your family may have: http://www.celiaccentral.org/What_is_Celiac/13/

As I said, there is a lot of info out there. Let one article lead you to the next and keep researching! What we put into our bodies affects the way it runs. Some doctors will tell you food has nothing to do with it but they are still learning. No matter what some may tell you, please don't discount this option until you've tried it! :)

Take care!

C.,
Our son got his formal diagnosis with a neurologist. They had a test he could do that diagnosed him with a processing disorder and ADD. Also, remember there are different levels of autism. There is high functioning and pretty much barely there. It sounds like your son is obviously high functioning. I would make some calls to see if a neurologist can diagnos you son. The sooner the better so that he can have proper treatment. We wish our son had been diagnosed sooner.
W. M.

Definitely don't give up in pursuing professional help. You can get it at this age. You want to see a child psychiatrist or pediatric neurologist for a diagnosis. A psychologist can't make the diagnosis. With Kaiser, you may need to push to move on from a psychologist to a psychiatrist, but do what you need to. In our case, our son getting kicked out of preschool opened the door to reaching the psychiatrist. Dr. Collins in Roseville has been great in helping our son. If anyone discounts your family history, then ask to see another psychiatrist.

Our son has ADHD and we got the diagnosis from a psychiatrist when he was five, but were receiving help from the medical professionals at age three. You know when things aren't right as a parent and in our case, we got strong confirmation from preschool that things were definitely out of the normal spectrum.

The issue with tags on clothing is a sensory issue. Our son has that as well (in addition to OCD). His socks have to have the lines perfect or he loses it and can't go anywhere. Sensory issues often accompany other disorders.

If you want to learn more about ADHD, the website for ADDitude magazine is a good source of neutral information. www.additudemag.com. It's hard to know from what you described whether your son might have ADHD. Some of the things you mention sound like definites, but others aren't what we've experienced. Kids can have different forms of ADHD.

Also, don't ever be afraid of labeling your child. It was the best thing that happened to our son. No more being labeled as the "bad" child or "out of control" child. He has a medical condition we've found that's made a lot of difference in working with schools.

Good luck!
M.

Hi C., My friend sent me an email with your message. I have been going through some similar things with my 6 year old son and have been on a quest for more answers since he was about 3-1/2. We also have been to the MIND Institute - 4 times and they did not diagnose him with autism or Asperger's. My husband and I also knew he had behavioral and learning challenges. For us, this did not become apparent until he was starting preschool. After a full assessment by the school district, they concluded that he has sensory integration delay and pragmatic speech needs. He has been receiving OT and speech services now for a couple years. He, like your son, is also very much into knowing all there is to know about subjects of interest, he flaps his arms when focused on TV or a book of interest, he does some eye contact avoidance and has trouble completing tasks in kindergarten. He also has behavioral outbursts not appropriate for his age and has trouble with transitions. He is a very bright and loving boy and I totally understand what you mean about wanting to do all you can to help your child be successful. After my friend's advice we had our son tested for celiac disease/gluten-intolerance and have since taken him off dairy and gluten. Tests came back he was not celiac but had the gene sensitivity for gluten. We think it has made a great difference in his behavior and he has even told me he feels happier since the diet change. Also, we are going to consult with a Peds. Neurologist to see if Asperger's or something else may be causing some of these issues. I agree with the person who mentioned the Warmline to call and don't give up! As parents, you know your child and what is best for them.