PPMD Community

Duchenne MD & Autism Spectrum Disorder

Information

Duchenne MD & Autism Spectrum Disorder

Patients living with DMD & Autism Spectrum Disorder. 

Members: 10
Latest Activity: Jan 18, 2016

Discussions

This group does not have any discussions yet.

Comment Wall

Comment

You need to be a member of Duchenne MD & Autism Spectrum Disorder to add comments!

Comment by Hope on November 16, 2015 at 5:15pm

Hello, I hope this group is still active. My boy will be 2 next month and he just got diagnosed with DMD. My question is how did you know that your boys have both Autism and DMD? My son was diagnosed with ASD when he was 14 months old and I would agree that we had most of the red flags, but now my DR is telling me that he probably  never had ASD and that his global developmental delay, including speech and gestures are caused by the DMD. He used to do some repetitive things, but it went away. So how did you know? 

Comment by Suzanne Desmond on October 1, 2014 at 10:52pm

How is everyone out there?  Sorry I have not been on here in awhile.  My son Francis is now 16.  How old are your boys now?

Comment by Suzanne Desmond on December 7, 2013 at 4:49pm

Hi,

Anyone else out there on this site that their son has Autism Spectrum Disorder (ASD)?  Trying to grow this group if at all possible.

Comment by Shana Creel on January 25, 2013 at 1:49am
I just found this group and am so glad to know there are other families experiencing similar issues as we are. Suzanne, I am curious to know how your son is doing now and how old he is. My son is 11 and was also not diagnosed with ASD (PDD) until 2009 I think by the school district. We really already knew it but just needed the formal diagnosis. My biggest concerns for him related to PDD is his difficulty with social interactions and learning. We go to Cincinnati Children's for his annual check ups in June and I have requested a Neuropsychology assessment so hopefully we will gain a lot of good information and recommendations from that. Thanks for starting this group and hopefully we can get other members involved in further discussions on this topic! Sincerely, Shana Creel
Comment by Suzanne Desmond on July 19, 2011 at 9:47am

Welcome to my new group.  If you or your son has Autism (ASD) and you would like to vent, discuss or just need advice.  I hope this helps thows & their families with Autism in addition to DMD.  My son Francis has ASD in addition to his DMD.

People can have multiple disabilities so just because they have DMD does not mean that it is impossible for them to have Autism.  If you suspect your son has Autism it is urgent that you get it diagnosed early as possible so they get the help they so need to lead a happy life.  Get them tested by a Neuro Psychiatrist if possible even it's just to out rule the disorder.  I do not wish ASD on anyone, but having DMD or even BMD is hard enough without ASD on top of it.  Don't get me wrong our sons physical health is very important, but I sometimes I think we are so focused on helping them physically that we forget that there is a mind inside that needs help as well even if it's just coping with their feeling about thier disease & how they feel about their bodies.  Please feel free to vent, ask questions, start your own discussion or even another group similar to this one.  I just want ASD in DMD to have a voice & to be recognised in the community.  Lastely & food for thought.  My son Francis has been in special education since the age of 3 & want not diagnosed with ASD until the age of 10 which is very old.  Don't ever let your school district ever tell you that your child does not have Autism without them being tested first.  Get them tested indepently outside of school.  Now we are in need & desparetly trying to teach him to handle himself & teach our selves how to handle him & support him in his needs.  Please go to Autism Speaks website to learn more about the signs of Autism & then get your son checked out. I love Francis with all my heart & despite his two diseases he is such a joy to our lives & teaches our family what the important things in life are & that is humor, friends, family, living & most of all love.

God Bless, Suzanne Desmond, mother of a son with DMD & ASD 

 

Members (10)

 
 
 

© 2017   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service