Identical Twins - One with Autism

[Ben&Sam]

Hi - I have 27 month old identical (confirmed by a DNA test) twin boys: Ben and Sam. Sam received an dx of Autistic Diagnois at 24 months. Ben displays no autistic behaviours at all.

I am looking for another parent of identical twins where one has autism and the other doesn't and I haven't been able to find anyone who has twins in that category.

Apparently the concordance rate of autism amongst identical twins is 90% - so for one to have autism and the other not is quite rare. Liz

[smooreirl]

I have four year old b/g twins and my son has Autism. They were both in EI very early because they were preemies. We receive OT and speech and Luke went to a special sensory school three days a week for a year. When he turned three the school system took over and he began preschool in an integrated setting where he received speech and OT as well as outside services of OT and speech that we brought him to. Early intervention is so important. Please pm me if I can help in any way. Julnsmokey is also an amazing mom and a wealth of information

[Ben&Sam]

Hi - thanks for your very prompt reply - I'd love to correspond with you. How do I pm?

[smooreirl]

Top right corner where it says private messages :wink:

[carry]

I'm here also. My son has autism. He was dx'd just after he turned 2. He is completely nonverbal. he just started receiving wrap around behavior therapy 25 hrs per week and he also gets about 4 hrs a week of various other EI therapy like speech and OT.

PM me if you want to talk. I can't say that I have seen or heard anything about identicals with one with autism and one without. I would agree that it is very rare and it makes you wonder how much genes/genetics play or don't play into it.

Carry

[ajmommy]

Hi Liz,

I was so excited to see your post!! I have also been searching for other parents of identical twins, one with autism. My girls are 3 yrs old, one is autistic, non-verbal, very sensory. The other is a "typical" child.

No doctor, therapist, teacher, parent, etc. has ever seen this before and I was beginning to think I was alone. I am new to the message boards, not sure how it all works. I joined because I came across your post when searching the internet for info on identicals where one has autism. Hope we can be in touch!!

Alison

[Ben&Sam]

Hi Alison

I hadn't checked this message board for months and when I did I found your post!!!

I amazed and excited that I have finally found someone in the same situation and with twins almost the same age.

I knew there must be someone out there as how else would they compile those statistics about the percentage of identical twins where only one has autism?

I am now just hoping you check this site again. I have also sent you a pm.

If anyone else knows Alison PLEASE let her know I have replied and would love to correspond with her.

Liz

[BEB2711]

I wanted to let you know that I saw a special on NOVA the other night about ID twins where one had Autism. Here is a link on the program...

http://www.pbs.org/wgbh/nova/transcr...413_genes.html

http://www.pbs.org/wgbh/nova/genes/

[lifeX3]

Hi Ladies...

Though neither of my twins have been dx'd with autism I do have a 16 year old son with asperger's so I have done a lot of research. I believe autism to be genetic ONLY in how the immune system works and when "triggered" the neuro system gets affected and hence a growing brain. Anyway, I didn't make that up myself, I have found and read a lot of this doctor's research. His name is Michael Goldberg and his site is www.nids.net. You may want to look through his research as he has brought children out of their "autism world." I have just asked my pedi to do the blood work that Dr. Goldberg recommends and she has agreed if for no other reason than to help his research (I live in PA and Dr. G is in CA but they can contact him). Dr. G is categorizing the B/W results with the symptomology and has been begun developing more treatments based on the individual results.

I pray for successful treatments, peace in your spirit and all the hope that love can and does bring to your families!!! Its not an easy battle but its a winnable one!!!

xxxLife

[canuxican]

I just took my 19 month old boys to be tested. According to the Hawaii test, my one guy failed three out of the20 questions I was asked and that they observed. He will not be serviced by them but recommended OT for sensory.... He still mouths everyhing. I am totally lost here and very overwelmed. They said they do not diagnose until they are 3. I cannot wait that long. Hope thus group can offer up some support.

[Ben&Sam]

Hi Canuxican - I am currently reading The World of the Autistic Child : Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel Ph.D. It is brilliant!! It describes autistic behaviours (eg lack of imaginary play, lack of shared attention etc) and how a diagnosis is made - a child can absolutely receive a diagnosis before 3 years. My son received his diagnosis before he was 2 years of age. The book is fantastic also in explaining what a diagnosis or the possibility of a diagnosis means to parents eg overwhelming grief, sadness etc. The third part of the book (which I haven't read yet) is about treatment options. As soon as it was suggested that our son may have autism (and before the diagnosis) we started therapy -we felt we couldn't wait for the diagnosis or to reach the top of the public health system waiting list - by finding / using private therapists. You have a window of opportunity when your child is so young to make a real difference to your child's future. Our OT said our son is the youngest child she has worked with and our son has made such progress that she would go as far as to say that our son is an example of early intervention being a success. Thinking of you. Liz

[canuxican]

Thanks for the info on the book. May I ask what made you think autism with your son? I feel overwelmed but am already getting my school district involved with OT.

[Ben&Sam]

Sam had glue ear and he had a hearing test which revealed he couldn't hear much. We thought this was the reason that he didn't readily respond to his name. He also had a fixation with a lock on our coffee table - we thought this was because he could hear the tinkle it made. He would also immediately appear at the dishwasher when it was opened - it made a beep and we also thought this must be something that he could hear despite his glue ear. We were told that once his grommets were inserted he would very quickly catch up in terms of language. This didn't happen.

Sam has always been much smaller than Ben (there has been 3 kgs difference since they were 18 months, although only 500g at birth) and I wanted someone to explain to me why there was such a big difference. Our paed said he was 100% sure there was nothing wrong with Sam, that he was just going to be a little guy. This just wasn't an adequate enough explanation so I took the boys to another paed for a second opinion and she gave us a referral to an autism assessment team.

I hadn't actually suspected autism but once it was mentioned and I did a search on Google for the signs of autism, Sam had most of them eg no waving, pointing or clapping, no imaginative play, little eye contact, no words, no looking at you to share an experience, obsessive / non-purposeful activity eg sliding doors back and forth, pushing draws in and out etc. Meanwhile Sam's twin Ben was developing normally, joining in with his older brother and playing, using words, dancing, pointing, playing imaginatively with his toys etc.

I would really like to see an awareness campaign about the signs and symptoms of autism as I didn't know there were so many that can be identified at a very young age. If Sam had been our first child and not a twin it would definitely have taken a lot longer to pick up. Liz

[kcut4th]

I haven't been on this board since my boys were born (they're 20 months now), life has been too hectic! Imagine my surprise to find this thread while doing some research on autism in twins! I currently suspect that only one of my identical boys has autism. I do not yet have a diagnosis. I have spoken with our pediatrician and he agrees that A shows some autistic behaviors, but not enough to "pass" the screening test. He wants us to keep a close eye on him at this point and follow up with him in a few months. In the meantime we have a referral for both of the boys for a speech therapist because they are delayed.

I know this thread is old, but if any of you are still around, I would love to hear from anyone who has been through a diagnosis.

Kristen

[Brownie]

I don't know who else is still around but I have identical twins (they are 3) and one has Autism and the other does not. You can PM me anytime if you have any questions!

[Ben&Sam]

Hi there - I started this thread in Feb 2008 and have only been checking it every couple of months. Brownie Iwould LOVE to talk to you. You are the first person I have come across with identical twins - where one has autism and the other does not. I am so glad I have found you!!!!