When Your Child Is Diagnosed With Aspergers

It’s been 16 days since I sat on the suede brown couch in the Dr’s office while Samuel played with legos, and the Dr went over the results of Nakiah’s ADHD test. He showed me the computer test she did and went over the paperwork I filled out and submitted. We went back into the family history and the notes he took from our first meeting. I remember sitting back on the couch with my legs crossed, trying to give the impression that I was cool and calm…the reality is that I was extremely nervous and anxious to hear what his findings were. I had a million thoughts racing through my head, and I braced myself when he started talking about the diagnosis. My heart rate went up and I’m pretty sure I started sweating…. Then the Dr looked me right in the eyes and said Nakiah is a very high energy child, but she  does not have ADHD…..she has Asperger’s.

aspergers

I felt relief that it was not ADHD and there would be no battle in the future over medications, because I was firm on  not medicating her if that turned out to be the diagnosis. Then my heart sank a little as he explained that Asperger’s is basically high functioning autism. He explained to me that the paperwork he had me fill out and the questions he asked me during our previous appointments were to determine if she has Asperger’s, not ADHD.  He explained that it’s a common mistake and often children end up being misdiagnosed because the signs and symptoms can look the same. I’m so glad he picked up on this right away…I guess that’s why he’s so good at what he does. The reason he didn’t tell me earlier is because he didn’t want me thinking she had everything under the sun. He apologized in case I thought he was being deceptive, but I didn’t feel that way at all. Instead I thought it was very clever of him.

The puzzle is coming together so perfectly now! It’s still a lot to take in.

The first week I cried off and on because I was so happy to have someone confirm that I am not crazy, it’ not all in my head, and that there is something going on with my child! Then I would cry because….High Functioning Autism? Oh. My. Gah. And I would feel so scared…how am I going to deal with this? What is life going to be like for her? What does all of this really mean? Am I going to be able to handle this? I look at her and she’s the same child she was before we walked into that office for the first time. She’s the same child she’s always been, the child who made me a mother, sweet, sensitive, curious, social, bright, full of energy. I’ve been given a glimpse into her world. After researching my eyes out these last two weeks I feel that I have a much much much better understanding of how she views the world and why she does the things she does. I’ve enjoyed reading up on Asperger’s and girls with Asperger’s.

swing

I found video of an 11yr old girl with Aspergers. She’s so sweet and well spoken. I love her video What Aspergers Looks Like.

My plan of action now is to be present with her. Take life one day at a time. My friends and family will be here for us whenever we need them, and I’m working on finding a local support group should I ever need it. I’ve decided not to tell her about the Aspergers because I don’t think she’s able to comprehend that now, and I don’t want her to feel that there’s something wrong with her because there isn’t.

I will not refer to her as an Aspie, or my Aspie child. That is not who she is, it’s another part of her. Just as no two people are alike – no two people with Aspergers are alike.
There are many characteristics that kids with Aspergers may share, but the way they are manifested within each child is going to look very different. This is a short list of what Asperger’s looks like for Nakiah.

  • Delayed social maturity and social reasoning.
  • Fascination with a topics that is unusual in intensity or focus.
  • High social – loves to make friends, but has difficulty reading social cues from other people.
  • An unusual profile of learning abilities.
  • Needs reminders for daily activities.
  • Clumsiness – walking into walls, tripping over her own feet, etc
  • Sensory issues – food textures, clothing, restless sleep, sounds, loves touch re: wrestling, tight hugs, very physical.

Her Dr said it’s a good idea to continue homeschooling her if at all possible…he thinks it’s the best way for children with these diagnosis to learn – at their own pace and in their own way. I could not have found a more perfect Dr for her! (I’ll go more into unschooling with the diagnosis of Asperger’s and Dyslexia in another post.) Even though his specialty is ADHD in adults and children, he said that we could come back for talk therapy if we ever needed to.

chasingbirds

I created a Aspergers/Girls with Aspergers board on Pinterest. It’s not full, but there’s enough to get me started. I think the first book I want to read is the Out of Sync Child. This is only the beginning and I’m sure I’ll go through a roller coaster of emotions as time goes on, but having a better understanding of my child is going to make life sweeter and easier for both of us. We’ll cross the bridge of challenges as we get to them.

So much has happened in the last several months, even the last few weeks, and at times I feel completely overwhelmed. This is my life, this is the hand I’ve been dealt and I’m doing the best I can.

Thank You For Sharing!

19 Replies to “When Your Child Is Diagnosed With Aspergers”

  1. What a fortunate girl to have a Mama like you…loving and focused..ready for war. Your words are the battlecry of a warrior and I proclaim victory for you and your family. Continued blessings Sis!

    1. Thank you! I love the support system I have off and online. It’s amazing.

  2. I just read a book about how diet can heal autism and other illnesses. Let me know if you’re interested. I’m sure you have already heard about it by researching. Also, when I was a librarian my favorite customer was the most brilliant young (15) girl with aspergers. She was a reading fool!

    1. I have a book titled Healing The New Childhood Epidemics, and in it they discuss diet as part of the treatment plan.

  3. Darcel, this post is so wonderfully written. Klaw’s issues are different, but I do understand knowing something is different about your child & then getting confirmation through a diagnosis. You have instinctually been doing everything right for Nakiah, which is no surprise to anyone who knows you. <3

    1. Thanks Dana!

  4. Your post was very encouraging and I love the way you see your bright girl. The Out of Sync Child was the first book I read when looking for answers for my son before finding out his diagnosis. May you be blessed with love, support, and understanding throughout this journey.

    1. Thank you. I was finally able to start reading the book. It’s very interesting.

  5. Thank you for this post. It is encouraging and I love that you see it as just a part of your child — not a definition of her.

    Stopping in from Sharefest

    1. I wouldn’t want someone only seeing the things that I’m not or my quirks. Thanks for reading and commenting.

  6. This is so beautiful Darcel. She is so lucky to have you, and you are so lucky to have her.

    1. Nellie, thanks for coming by. I am lucky to have her. She’s teaching me so much about life and I love being her mom.

  7. Hi Darcel, I appreciate your intentions in simply being present with your daughter taking this one day at a time. A neat perspective on the autism/asperger’s spectrum is the book Awesomism by Suzy Miller. I have really found her insights helpful. Possibly you will also… here’s a link to her work: http://www.suzymiller.com/ Take gentle care.

  8. […] are still quite young at 8.5 years, 6 years, and 3 years. My oldest was recently diagnosed with Aspergers, and my thoughts on raising her haven’t really changed. In fact, I feel even more strongly […]

  9. Such an inspiring post! My 6yo son (my first born!) was diagnosed last week with aspergers and traits of dyslexia (though he has to be 8 before we formally test). His list looks a lot like your daughter’s! Except he paces as a stim as well. My instinct that something was going on was right…that’s how a mother’s instinct is!

  10. […] a blessing! I’m not saying my heart didn’t sink a little when I heard the Doctor say “Your daughter does not have ADHD, she has Aspergers.” It was and at times still is scary, but I’m also very relieved. We have a name and concrete […]

  11. […] knew there was no way those results could be accurate. You can read our story on how we came to the Aspergers diagnosis. It wasn’t on my radar at all. We ended up with a Spectrum Disorder Psychologists and we can […]

  12. […] I’ve told this story before so I won’t repeat it all but you can read it here. […]

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