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Another WAAD/Autism Awareness Month

Tomorrow, April 2nd, 2013 is the 6th annual World Autism Awareness Day and April is Autism Awareness Month - "Light it up blue!"

Every year around this time I try to do a post that's a bit more informational. Helping those without a close autism connection learn a bit more, as well as help those just embarking on their journey by seeking diagnosis or perhaps just received a diagnosis.

This year I'm posting my top 5 FAQ. These are indeed the questions that I've by been asked by friends, family, acquaintances, parents of newly Dx'd or in process of getting a Dx kids looking for where to start.

My TOP 5 FAQ regarding my son's autism

1.) How and at what age did you suspect Ethan was autistic?

This is by far #1 most asked. People are curious and I have not problem talking about it. I think some parents freak out about labels or other people asking. I don't relate to that and am rather confused by it, but everyone has to follow their own path. I think it's good to share experiences. The short answer is around age 2, Ethan still wasn't talking, gesturing, or trying to communicate in any form. He did not respond to his own name when called. He could be detached and 'spacey'. He was fascinated by objects and disinterested in people. We went through about 9 months of evaluations and Dr.'s appointments. My full detailed Timeline of a Diagnosis has been posted on the web for quite some time and is still available if you're interested.

2.) Do you think he'll ever leave home?

I wasn't sure how to word the question, since it gets asked in many ways, but this is the 2nd most frequent question that I get. People are naturally curious about Ethan's prognosis. He's fairly high functioning, and they wonder if he'll matriculate into society. The short answer: I don't know. The odds are stacked against him ever being 100% self-supporting and independent. He has a decent shot, but at almost 12, it's still to early to tell. My best guess is that he will have some independence but will probably need to rely on us (his parents) and his brother for some support (financial and life skills) for the rest of his life. Only time will tell.

3.) Is he on medication?

Up until 2 years ago the answer would have been no. I'm fundamentally not an advocate of medicating children unless absolutely necessary. For Ethan, we didn't reach that point until he hit ~10. I also thought he was old enough at that point to try certain meds without much risk. Risk assessment is something that all parents must go through themselves. Currently Ethan takes melatonin (which I really don't count as a 'med'> to help with sleep onset, and he's on prozac as well as in a memantine clinical trial. More detailed posts on that here: To med or not to med. Things are fairly good right now and we're evaluating the efficacy of the memantine.

I do heartily recommend consulting a physician (or several) for your options.

4.) What has helped his behavior and ability to function?

Therapy, therapy, therapy. I say it like that because there is no one holy grail of therapy. Ethan has received in various forms at various times: ABA, DTT, behavior therapy in naturalized setting, RDI, CBT, Social Thinking, Social Stories, and many others. Every child is different and depending on age and development different types and styles can be employed to address your child's needs.

I will add that as he got older ~9/10 his emotional regulation issues really overshadowed his behavior. Now that he's much more stabilized on the prozac, it's allowed Ethan to actually employ the CBT (cognitive behavioral therapy) techniques that he's learned.

5.) How does he do at school?

He does well. It's been a very long journey. Ethan is cognitively intact and does well with most basic academics. Areas of comprehension that involve inferencing and taking perspective are not natural to his way of thinking. He's much more black and white and excels in math, science, spelling vs. analyzing historical events or motivations of characters in a short story.

Socially, he's still rather detached, and that's the area I'm hoping to see some improvement over time and with some social groups at the school. There's always the bullies and there are always those sweet kids who are extra friendly and reach out.

Last piece of advice for the day: Something we did that I'd recommend heartily is getting new evaluations as your child ages. Ethan received a full evaluation at 2 years old, and that was it until he was 10. It was helpful to do several new, outside of school, evaluations. By every measure Ethan still meets the DSMIV for autism, and I'm guessing he always will, but it was good to revisit the diagnosis and re-evaluate his areas of strengths and deficits.