GUEST POST: Debra Kristi – An Asperger Geek Link

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As you should all know by now, April is Autism Awareness Month. Having spent three years working closely with children with autism, this is a subject very near to my heart. But I am not a parent of one of these wonderful children. So, no matter how much time I spent with them or how much I love them, I can’t speak to what it is like to be the parent of one and live with it 24/7. Thankfully, the wonderful Debra Kristi, who is the parent of an ASD child, agreed to share with us. I will now hand it over to her.

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Wow! It’s a pleasure to be here at Jessica’s castle of the Sexy Nerd again. I must admit to feeling rather nervous when Jessica first asked me to be a guest for her autism month. You see, my son was diagnosed as a high functioning Asperger late this last year, so the subject is still fairly new to me.

It’s easy for parent’s emotions to get clouded at the time of a new diagnosis such as this, but to be honest, it was a relief to finally make sense of all the outbursts, and uncharacteristic behaviors. For a child of ten it was troubling that he was still having a hard time making friends and becoming extremely anxious over change. By change, I mean things such as a new sports coach, for example. He also wouldn’t hold eye contact for more than thirty seconds nor stay in a conversation that wasn’t one of his choosing. His monologue would go on without ceasing even when the world appeared to be ending for others around him, he’d simply talk right over the crazy. It was maddening. But finally, having something to work with made approaching each situation somehow more doable and less frightening.

We can now better help direct him, as we are more appropriately prepared to help him be a more productive member of society. It takes time and effort, but he can learn to pick up on those social queues that come so naturally to so many of us. People with Aspergers live in a different world than you and me. They see things in their own kind of light. In many ways, it’s rather brilliant and amazing. When the little kids around him were singing “Wheels on the Bus” my son was humming the full orchestration theme to Star Wars or Indiana Jones. When talking to an adult, he will almost always say things that sound years ahead of his age, and come across as considerate and bright. But in dealing with children his own age, that’s where his social skills are lacking and where much of our challenge lies. This last year we saw some vast improvements because we addressed them in new ways.

It used to be that autism cases were 1 in 10,000. But those numbers are rapidly growing. In the 1990’s they had already tripled in California. Aspergers is one of the disorders on the autistic spectrum. It’s a milder form of the condition. While a large percentage of those with other autistic disorders may suffer from mild to severe mental subnormality, Aspergers generally have average – or even very high IQs.

One area where the rates are especially elevated are Santa Clara County. What do you think of when you hear that? Silicon Valley, right? Geek central. Aspergers is becoming known as the engineers disorder. One of the single minded.

As the increase of children born with Aspergers in these areas continues, a reverse diagnosis is taking place. Parents are finding out that they have a milder version of the syndrome. Areas such as Silicon Valley bring together people of like minds that are more likely to already be on the autistic spectrum and are therefore more likely to produce autistic, or Asperger children. Some economic and business areas are prepared for this and have schooling systems in place to meet the families’ needs.

This increase in the autistic and Asperger syndrome is a more recent development with the education of women and their entrance into the computer, educational and programming fields where we see many of these developments taking place as a result of these like types pairing up and starting families. But they are not contained to just these areas. It is wide spread as techie minded and artistic types are in many fields.

Of course environmental factors have not been ruled out and are still being looked into, but it is believed by scientist that genetics does play a part. As to how much, it’s hard to say.

When my son was diagnosed, my family started sending me articles. I jumped on the internet and borrowed books to do my own research. You can imagine how this new knowledge overwhelmed me. But, as it settled in, it started to make sense. Looking back through my family line and what I know of my husband’s, I can see the syndrome playing a part in our bloodlines, mild as it may be, and undiagnosed through all these years. It’s rather fascinating to think about, really.

My son is smart and he is coming along fine. He will do alright in life. His hardest challenge will always be on the social end of things, but he has a support group now to help him see his way. Who knows, he may be one of tomorrow’s brilliant minds. Personally, I hope he develops his amazing art talent. But it’s all up to him. The future is wide open.

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I would like to give a HUGE thank you to Debra for writing this post and sharing this part of her life with us. If you are curious about the subject that Debra brought up and would like to read more, you can check out The Geek Syndrome, published in Wired Magazine.

Debra Kristi lives with her husband, two active children, and one White’s Tree Frog. She is currently working on her first Young Adult Fantasy novel, but has many more stories to share. She holds a degree in Operations Management and a Professional Designation in Visual Display and Spatial Design. When not writing or trapped in homework hell, she is usually building puzzles or Legos with her kids in her free time.

26 responses »

  1. Fantastic post. Thank you. I think the observations about reverse diagnosis are spot on. More parents than ever are now embracing the understanding that they share some very similar traits. It’s not true for all parents but it is increasingly true for some. Cheers Seventh

  2. Wonderful post Debra (thanks hosting and bringing such attention to this topic Jessica). I can only imagine how you feel Debra. My godson was diagnosed with high function aspergers when he was about 5 years old and I know that although it was hard for “some” of the family to accept this, for his mother, it was a huge relief. For her it explained so much and it also opened up a huge door of support and education on how to help her son become the best that he can be. After a few years of intense ABA therapy and a determined and now well-educated mother, I can tell you that her son is doing wonderfully. Yes, he still struggles, at 13, with his peers and in social situations but he learns and improves with every day and year that go by.
    I can attest also to the beauty of the gifts these children have. The sense of humor, the intelligence, the quick wit, the literal understandings, the tenderness, the compassion…I could go on for hours…it’s astounding and he is a HUGE inspiration to me…
    Here’s to you, your family and your son and all the success and wonderment to come! Through the greatest challenges come the greatest wins!
    HUGS!!

    • Thank you so much Natalie. It’s a ride we have just begun, but it has helped so much simply knowing what we’re dealing with. This year he’s in the class with all the GATE kids (smart and highly gifted) and it has made a huge difference on the social end of things. He’s around kids with like interest. He’s around others that want to do geeky things all day long and shy away from sports just like he does. Sound familiar? Thank you for the hugs. {{hugging}} you right back!

  3. One of my sisters has 3 boys on the spectrum, so it makes me think too that genetics must play some kind of part. Thanks for sharing your story!
    Thanks Jessica!

    • You’re very welcome Coleen. They say that if you have one child on the spectrum the following children are more likely to fall within that spectrum. We keep watching our youngest. She is a spitfire and clearly doesn’t have the same issues as our eldest. But there might be something. We’ll keep watching.

  4. Thanks for having Debra guest post, Jess, and bringing this topic to the forefront. Debra, fantastic post. I’m like you and having information that I can assess and deal with would be a relief. I believe we’ll learn more and more about this as people finally start talking about it. So, thank you for sharing.

    • You’re welcome. Being in the dark is absolutely no fun. I agree, Ginger, knowing helps – your state of mind, if nothing else. And I agree, we should learn more moving forward as more people start sharing their stories.

  5. Thanks, Jess, for having Debra over.
    Debra, your post is brilliant and close to my heart. I have a family member with autism (see my comment on Jess’ previous post) and people in my life in the spectrum (and bordering it). Having the knowledge and a support group is essential to nurturing and understading them.
    Thank you for writing this piece.

    • Wow. I must be tired today. First I type a long response to you and lose it, then I retype it and it doesn’t go in the response window. :( Look for my response to you further down the line of comments. Sorry Fabio.

  6. “It’s easy for parent’s emotions to get clouded at the time of a new diagnosis such as this…” I can really relate to that, except I’d known for a long time that CJ was likely autistic. School personnel kept promising to have him tested but I finally took him to a university for independent testing. It was no surprise when the results confirmed my suspicions…and I was depressed for about three months afterward.

    But it does help to know because once you do, you can deal with it. The school district also has to start formulating plans for your child’s education (you have to stay on their backs, though, because they can and will slack off).

    Knowing doesn’t make everything easier, but it helps a whole lot. And I think it makes life easier for the child because people SHOULD stop having unrealistic expectations. There will always be some who are judgmental, but they don’t matter. Your child does.

    Your son is lucky to have you for his mother, Debra. With parents in their corner, every kid can reach their full potential. :)

    • Thank you, Kristy. I can relate to that. I took our son to the doctor with the information in hand looking to have him checked. I turned out to be right. Even though I went in suspecting I was still a little taken back. It’s hard, but good to know.

      This year his teacher knows and does her best to work with him, but things still come up. For example, she marks him off on making eye contact when delivering his oral book report. Well, that’s always going to be an issue. He’s not going to be good at eye contact and can’t be judged the same way as other kids in this area. She should know this having talked with her and filled out all the paperwork for the doctor. Sigh. In second grade his teacher pretty much destroyed him. He had no self-esteem after a year with her. She was a horrible woman to be working with children and we made sure the school knew it. His third grade teacher did wonders to build him back up again, but we went through some hard times dragging him to school and prying him off me after the previous experience for a while. :(

      BTW, the other teacher is no longer teaching. Of course they let her retire with honors. :P

      • It’s just ridiculous how many people are working in special education who have no business being there. I was a major pain in our superintendents butt to the point where he stopped taking my calls…until I asked his secretary if I’d been blacklisted. Even knowing he’s autistic, and even having yearly IEP’s, some teachers just shouldn’t be working with special needs kids. And they for sure shouldn’t be retiring with honors.

        Others you’ll want to watch out for are bus drivers…and principals. Not that all of them are bad…but some are. And remember this one very important thing…

        If your son ever becomes the victim of bullying by ‘normal’ kids, and you can’t get anyone in charge at the school to make it stop…threatening to charge everyone involved…including administrators, bullies…AND their parents…with child endangerment works wonders. Especially if you make it clear that you WILL follow through. Some ‘normal’ kids are the most rotten people on the planet. I’ve never wanted to beat kids up before but I’ve been at that place a few times because of CJ. :)

  7. Great post, Debra and thanks to Jess for having Debra talk about this issue. My oldest son has Asperger’s and I relate to and understand everything you mentioned. As a parent, you want to protect your child and it’s hard to realize that not everyone will get to know the smart, funny and amazing little boy you’ve produced.
    I think there are a lot of people our age who have some form of autism, but was never diagnosed. We just thought they were weird; there was no name for it. And if the statistics are correct, eventually everyone will know someone on the spectrum.

    • A lot of people shy away from what they don’t understand. But someday, when they are the creators of the next million dollar idea, everyone will want to know them! LOL But seriously, you find that niche for them where they are happy, that support group of friends and they will thrive and do fine. They don’t need to be buddies with everyone on campus.

      I completely agree, a suspect there are a lot of “weird” adults today that would probably fall somewhere in the spectrum if tested. Most of them have done alright. Our biggest concern has been the social aspect. This year is seems to be working out alright. I hope your son is finding the same kind of connections and successes with support groups and friends. It can make all the difference in their mood swings.

      Thank you for your comment Tracey.

  8. You are very welcome. As you probably know, there are several very successful individuals that are suspected of being in within the spectrum. They can have very productive and fulfilling lives. It is up to us to build that firm foundation for them. As you probably gathered from my intro, this is all part of the learning curve for us at our home. It sounds like your family is well versed and full of strength and love. That’s beautiful, Fabio. I really appreciate your comment.

  9. Jess, I’m so glad you hosted Debra today.

    Debra, thank you for sharing your story with us. I agree with Kristy, that your son is lucky to have you for his mom. Thanks to you being on top of things, your son was diagnosed and now you know what you’re dealing with and are able to help your son. I believe knowledge is power, and all that research you did and reflecting on your husband’s and your line of family members, it all helps to put the pieces of the puzzle together so everything fits in the best way for your son to thrive. I think it’s so cool that he’s in GATE. You must be a proud mama. That second grade teacher, oh my gosh, I got all worked up reading about her. I’m glad she’s no longer teaching and scarring little kids’ lives because of her own hangups. Sheesh! Wonderful post, Debra.

    • Thank you for saying so Lynn. It’s been a big change this last year, but all for the better. Yes, that teacher was a really bad experience. I can’t even begin to express the heartache, pain and anger felt that year. She wasn’t “seeing” my son but expecting him to be a cookie cutter child. As for GATE. He isn’t a GATE child since they placed the children during their second year and his second grade teacher didn’t recommend him, but in the light of him scoring 100% in most areas on the tests last year I think they decided he would best fit in with that group. Now this year proved to be a little tougher examine wise. The room is noisier and it makes it harder for him to concentrate. Class size is larger and they have changed the math program this year so that everyone is confused. No one more than me. :( But he’s adjusting and more recently we’ve started seeing the grades reflect what we know he’s capable of. Yay! Summer we’ll get him a mix of fun activities and learning exercises to better his standing.

      Thank you so much for stopping by. Your comments are greatly appreciated.

  10. Thank you both for this post! I didn’t know that April was Autism month. But then I haven’t known what’s been going on this month. I’ve been a bit out of it as you know. So I appreciate being brought up to speed. And Debra, I can’t imagine what a relief it was for you and your husband to learn about your son’s disability so that you could finally understand why he had certain behavioral patterns. Good to know that he is highly functioning! I bet he’s as smart as a whip! But still, socially that’s a tough nut to crack. You girl have a lot of patience coupled with L.O.V.E.! Thank you for sharing your personal experience. Educating people can make a world of difference! Take care both of you! :)

    • Thank you for stopping by Karen. He is pretty smart. We struggle in other areas, but like you mentioned, it helps to know and understand now – a lot. Hopefully he will someday understand some of the social queues so that he won’t step on others toes and upset the wrong person. Whether he does or not, we will be there for him. I honestly believe that God only gives us what he believes we can handle. I’m the lucky one. Lucky to have him. Hugs, Karen.

  11. Debra, I’m on the board of a non-profit organization near you – it’s run by a friend of mine, Mia. Here is the site, and I also sent you a note on Facebook: http://www.asi-f.org/

    As a former Autism Technician, I understand how frustrating it can be to try to get help. One thing to keep in mind – the state of California is required to make and IEP (Individual Education Plan) for your child if you ask.

    The IEP can help offset situations like the one you ran into with the book report. You can add ‘eye contact “x” percentage of the time’ or ‘during “x” activity’ as a goal on the IEP.

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