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Any experience with Autism and 22q11.2 distal deletion syndrome?

A MyAutismTeam Member asked a question 💭
Wirtz, VA

My daughter Sarah has ADHD, ASD, and now 22q11.2 distal deletion syndrome. This is very new to me and Im not finding much information that is helpful. Anything on managing behavioral issues and sensory issues would be helpful. We are having a rough school year already and our school system would rather send her home or have her sit in the office all day instead of learning with the rest of the kids.

September 7, 2012
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Answer Summary

Members connected over the challenges of raising children with 22q11.2 distal deletion syndrome, a rare chromosomal condition that often... Read more

Members connected over the challenges of raising children with 22q11.2 distal deletion syndrome, a rare chromosomal condition that often overlaps with autism-like traits, sensory issues, and learning delays. Several members enthusiastically directed others to a Facebook support group that has grown to include families worldwide, offering a much-needed space to share experiences, swap strategies, and feel less alone in navigating diagnoses that are still poorly understood by schools and medical professionals. A recurring theme was the difficulty of finding helpful information, the frustration of schools that lack patience or resources, and the relief of finally connecting with other parents who truly understand the daily reality of managing complex behavioral and developmental needs.

A MyAutismTeam Member

Hi Ladies,
My name is Christina regan and i live in westfield NJ.
I have a daughter who is 5 and just yesterday after her results from her geneitc testing came back, she was diaagnosis with 22q11.2 distal deletion.
She also has sensory /behavioral issues. I call amelia my little onion becasue you peel another layer and another issue needs to be addressed.
amelia is highly functional and attends a mainstream pre-school and a specialized IEP pre-school that is offered in our town. She is immature on the social issues with other little girl,learning difficulities and needs constant re-direction,focus to stay on topic and learn.
i have not met or talk with any other mom who can share in my daily life with Amelia. I am hoping that this website can provide a network for me to talk and share my challenges. Any feedback would be wonderful.

May 22, 2013
A MyAutismTeam Member

hi, my son jack has 22q11.2 distal deletion he was diagnosed when he was 4, he is 7 next week, jack is vurtually non verbal he has 2 clear words and a lot of sounds but cannot talk or understand a great deal without a lot of visual cues or picture cards.this can lead to a lot of behavioural problems, jack goes to special school where they have the time patience and understanding to deal with him - he would just get lost in the system at mainstream school.
if you go onto facebook and type in 22q11.2 DISTAL deletion support group and ask to join, there is about 17 of us families currently from all over the world where you can get lots of usefull info and swap stories and photos, it is a closed group so no one other than the group can see anything, hope this was helpfull and maybee speak soon on facebook.

September 29, 2012
A MyAutismTeam Member

@A MyAutismTeam Member, you should join our Facebook page. 22q11.2 Distal Deletion Support Group, there are 36 of us now.

August 29, 2013 (edited)
A MyAutismTeam Member

My daughter actually has 22q, autism, and ADHD all separate diagnosis. @A MyAutismTeam Member the only difference I have noticed is the distal has fewer medical problems. The only thing medically wrong with Sarah was her heart defects. She has never had any other major medical problems.

August 29, 2013 (edited)
A MyAutismTeam Member

Hi we are in Nottingham. I found a question about distal deletion ages ago on here just doing a google search. But i do think a lot of the kids are asd or show signs of it, our son shows signs but they all say it is hard to say if he is or not as he dips in and out of symptoms. Look forward to talking properly on the Facebook group, once you get accepted, there are tons of us from all over the world all in similar situations

June 30, 2013

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