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A MyAutismTeam Member asked a question 💭
Houston, TX

We talked to our dr's at the autism center earlier this year and the possibility of our son being diagnosed with "intellectual disability" came up. I would love to talk to someone here who may be going through the same thing now or in the past with your child. Or if you don't mind sharing your story here, we would really appreciate it.
Thank you

December 26, 2016
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A MyAutismTeam Member

I have two ASD children on either end of the spectrum, I have a son on the higher end and a daughter who is nonverbal and on the lower end. She is now10 and has a vocabulary of about 20 words but does not form sentences. Cognatavly she is at a level of about a 2 year old. She uses base sign language, the words she knows and a tablet to communicate. She was self injourous before and still is on occasion but not really that much any more. It is tough having 2 ASD children but she is by far the most challenging because of what she can and can't understand and her lack of environment and fear.

I can't really tell my whole story there is to much to write here. I do have a blog I write that does tell the whole story. Look me up if you would like it is

Dualspectrumdad. Wordpress.com or just look me up on the site, I have over 100 articles that describe my children's entire life.

December 27, 2016
A MyAutismTeam Member

I have 2 boys with Intellectual Disability, ages 12 and 11. I don't believe this makes them low functioning, at least not the way I see it.

Our story is pretty complicated so if you want details I would need to know what information you seek. But here is some stuff.

My 11yo was diagnosed at 3 after setting the house on fire. He didn't start talking until he was 7 and currently is at about 5 word sentences so doing great. He is physically aggressive, a compulsory overeater, and has asthma. Also dx'ed with sensory processing disorder, expressive language disorder, pica, clinical aggression. He is not medicated at this time.
My 12yo was diagnosed with mental retardation at age 5. At 2 months he was on life support for unknown reason/ would have been termed SIDS if he had not woke up. As it was he still was lucky to live. He was diagnosed pdd-nos at age 10, the near death had doctors hesitate to call it autism vs tbi. Speech was normal through age 2 when all speech stopped and he started all over. He has garbled speech still, developmental apraxia of speech, but we understand him well and he is fully verbal. He does not like to be touched by anyone but me. Often withdrawn, and negative energy from anyone can drag him very emotionally low. He is currently not medicated regularly but he does take melatonin when he can't sleep.
Both of my youngest 2 have a developmental age of 3-5 yrs at this time. Both boys are in lifeskills classes at school.
They have an older brother who is nt (neurotypical), aged 13.

Feel free to message if you want to chat.

January 2, 2017
A MyAutismTeam Member

I have an 8 year old son who is autistic and mostly non verbal. We've recently received placement to a wonderful school that is helping him so much! We had to fight the school system hard but it was so worth it. I can finally breathe when I drop him off to school each morning! We live in mass.

December 27, 2016
A MyAutismTeam Member

I don't remember the exact mix but I think it the broad categorization is 50% High functioning ASD, 35% pervasive developmental disorder not otherwise specified (PDD-NOS) and 15% Low functioning ASD. Since 2013, the American Psychiatric Association just lumps them all together as ASD. My daughter was considered PDD-NOS and I was told she was therefore "educable".

She's been in special ed classes and ABA therapy but I don't she will ever get mainstreamed as time goes by. I wish we had insisted on mainstreaming her at first then if it didn't work out we would the special ed route. She's 6 and she's been in a lot of schools and therapy. I wonder if we could get her in say a 1st grade class in the next school next fall?

December 28, 2016

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