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Newly diagnosed and nervous about telling peers parents and own friends about diagnosis

NAS88305

My 10 year old daughter was recently diagnosed with ASD level 2 and mainly has issues with social skills, making inappropriate comments, making and keeping friends. She is in therapy and social skills group at school and I'm trying to find her an outside social skills group as well. While I expected her to have aspergers for awhile I am still coming to terms with it. I have not told many people, even some of my close friends and coworkers about her diagnosis. I also really worry about disclosing this information to parents of kids she is friends with. I am worried they will judge her and in my head make assumptions that they will not want their kids to play with her anymore because she is different and her behavior is less than predictable. She does act strange sometimes and perhaps disclosing her diagnosis will explain why she acts the way she does to others but I still worry about negative judgement. I want her to make and have friends who are role models for her, but it is challenging for her to develop friendships especially as she gets older. Has anyone else felt like this? How have you coped with these feelings? How did you disclose your child's diagnosis with others? 

  • A lot things didn't work for me when my son was first diagnosednearly 8/9yrs ago. Social stories did nothing as he couldn't relate if the contents are even slightly different. Eventually he was referred to a therapist specialising in a bottom-up approach called DIR Floortime by Dr Stanley Greenspan (https://www.icdl.com/). It took me a long time to understand him and his challenges, which then led me to try to incorporate understandings of neurotypical social cues and expectations using Lego (since we have alot of).
    Telling other people helped at times but mostly didn't as his behaviour already made them judgmental towards us. Over the years, I learnt that there will be people who eventually can accept him and he has also found some friends along the way, both neurotypical and also others on the spectrum. I found that those who accept him and us as a whole are usually those who knows someone else like him personally. But then again, we're also ok with having few good friends over many acquiantances.

    At the end of it all, the most important thing is what your daughter needs, and what she wants as she grows older. You can only be there for her when she needs you. For me the Floortime method of getting to know him through lots of play and chatting while playing together helps the most for me.

  • A lot things didn't work for me when my son was first diagnosed. Social stories did nothing as he couldn't relate if the contents are even slightly different. Eventually he was referred to a therapist specialising in a bottom-up approach called DIR FLoortime by Dr Stanley Greenspan (https://www.icdl.com/). It took me a long time to understand him and his challenges, which then led me to try to incorporate understandings of neurotypical social cues and expectations using Lego (since we have alot of.

  • in reply to Iain

    Thank you so much! This is very helpful and I really appreciate your feedback and book recommendations. Many thanks!

  • Here are a few books that may help with dealing with the challanges ahead. Note that Aspergers Syndrome is a term now absorbed into the larger scope of Autism.

    Asperger's Answer Book - The Top 275 Questions Parents Ask - Susan Ashley PhD (2006)
    ISBN 1402219776

    Asperger's Syndrome - A Guide for Parents and Professionals - Tony Attwood (2008)
    ISBN 9781843106692

    Asperger's Syndrome - A Guide to Helping Your Child Thrive at Home and at School - Melinda Docter, Ed.D._ Syed Naqvi, MD (2010)
    ISBN 9780470140147

    Aspergirls - empowering females with Asperger Syndrome - Rudy Simone (2012)
    ISBN 9781849058261

    CBT Toolbox for Children and Adolescents - Over 220 Worksheets & Exercises for Trauma, ADHD, Autism, Anxiety, Depression & Conduct Disorders - Lisa Phifer, Amanda Crowder, Tracy Elsenraat, Robert Hull
    ISBN 9781683730750
        
    Everyday activities to help your young child with autism live life to the full - Debra S Jacobs, Dion E Betts
    ISBN 9781849052382

  • NAS88305 said:
    I also really worry about disclosing this information to parents of kids she is friends with. I am worried they will judge her and in my head make assumptions that they will not want their kids to play with her anymore because she is different

    Stuff the other parents - this is no concern of theirs and if they judge your daughter on the diagnosis then they are not someone you want to give the time of day to.

    I think the other parents kids will pick on her whether the diagnosis is known or not. so it isn't really something to worry about.

     It is a fact that children are quick to pick up on it when others are different and this is what leads bullies to pick on autistic kids but can also make decent kids make friends with the same ones.

    Focus instead on the benefits of adjustments in school so she can learn more effectively and get access to support to deal with some of the difficulties of just being autistic.

    NAS88305 said:
    I want her to make and have friends who are role models for her

    She will never really be like these people though. Her brain is wired differently and this changes how she interacts with the world so expecting the same results as the other kids is going to put unfair pressures on her to mask her differences.

    Could it be you just want her to be "normal"? I would consider embracing her differences and teach her how important it is to be unique and to be proud of it.

    In terms of who to disclose it to - start with only those who need to know and consider asking her if she wants to chose who else to share it with. Teach her to have control and to own it so she grows to be confident and capable.