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PDA in the USA
  • Mjulson
    Posts: 1
    Hello beautiful PDAers and PDA allies. I live in the United States and I do, without a doubt believe my 5 year old son is a PDAer and I have a sneaky suspicion I am one too. He was diagnosed with ASD in September of last year and while he frequently presents some of the more common traits in other autistic conditions he absolutely presents all of the traits of the PDA profile. I wanting to know if there are other US members on here. The PDA Society and every other person I've been in contact with who accepts and understands PDA is in the UK. PDA is basically unknown in the US. Doctors diagnose children with ODD, Bipolar, ADHD, depression and anxiety. All they really want to do is give them drugs, rigid behavior plans if they are still in school and if the child does have an ASD diagnosis they want them to have 20+ hours a week of ABA or attend a specialized autism school where ABA is in the core curriculum. I do not want any of that for my son and because of that, I have removed him from school to unschool him at home. That is just not an option for many people and the chance of him needed to go back to school is likely. I am hoping to go to grad school to obtain my masters in ASD because my dream is to create a school model here in the US that might serve as an alternative to the common ABA therapies and other common autism strategies because I know these do not work with PDAers. I want to spread awareness and acceptance in the US. Any other Americans interested in helping me?? :) Or anyone in the UK want to help us out across the pond?
  • Em83Em83
    Posts: 62
    Welcome to the forum Mjulson! I am in the UK but I hope you find some fellow Americans to support you.
    A useful starting point could be a support group as a way of finding other parents and carers. This is the PDA society's guide with some useful information to setting up a group https://www.pdasociety.org.uk/resources/Support-and-advice/setting-up-a-pda-support-group .
    We also have links to international PDA groups which can be found here https://www.pdasociety.org.uk/resources/blogsandfacebookgroups . There is a USA PDA support group which may help to connect you to other parents and carers in the USA. Raising awareness and acceptance is key to our children's future
  • webbwebb
    Posts: 2,551
    Hi, there is one charity in the US who are raising awareness of PDA -

    PDA Matters - Why not contact them?

    I feel you are right to home educate, ABA which is so direct, may not be the right way forward for children with PDA.
  • Eliza
    Posts: 10
    Hello! We are in the US! My son is older-21. But we finally got the ASD diagnosis just recently. The US really does follow trends- our kids all get the same diagnosis based on whatever is trendy at the time they are identified it seems. Our doc does agree that PDA is the most fitting description for the symptoms we have been managing the last 18 years or so. I am hoping that the increased focus, awareness and understanding of Autism here will help! In the meantime you are not alone!
  • webbwebb
    Posts: 2,551
    Hi Eliza

    So pleased you found the website and forum.
    It's great to hear that Doctors in the USA are beginning to recognised the PDA Profile of ASD.

    Are there any charities or organisations in the USA that are keeping a record of the Doctors that are diagnosing PDA?

    We have been trying to keep a list, can you say who and where your son was diagnosed?
    We would only use the info to inform other parents in the US.

    There are some good books - https://www.pdasociety.org.uk/resources/books
    PDA Paradox by Harry Thompson (age 26) would be a great read!
    And great info on Strategies to help manage a childs anxiety/PDA behaviour -
    https://www.pdasociety.org.uk/families/strategies

    See our Adult Life section too.




  • Eliza
    Posts: 10
    I wish! Our doc agrees that the description fits my boy but he is not omg to jump on board with an actual diagnosis. We only just got the ASD diagnosis a few months ago and have been working with the same doc as well as a lot of “second opinions” . The Autism was formally diagnosed at my request and upon referral to another clinician who specializes in it. I alerted our doc to PDA and he called me back to tell me he even used the term with another family. Thank you for the resources. I will definitely look into it. I am happy to try to help to advocate for our families in any way I can. I am quite tired of everyone complaining about mental health issues and no one stepping up to attempt to change anything. I know for a fact that my son does not act differently on purpose!

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