Tuesday, March 1, 2016

Explaining To My Kids About My Son's Autism Diagnosis

Ike with Annelise and Rose-
please excuse the red eye
I have been involving you readers on my parenting journey nearly since it started, especially when it comes to schooling my children, and some things came up that make an impact on our lives as a family and future decisions that we will be making, so I thought I'd share it with you.

Since birth, I realized there was something different about my son, Ike. He's the son that initiated my gluten free journey, since gluten seemed to have a big effect on him behaviorally. He's always been very intense. Bright, but intense. And he's had some learning issues that have affected his ability to understand the local language.

I long suspected that there was something more about him, and had strong suspicions as to what, and on Thursday, I had him evaluated by a professional, and he was diagnosed with High Functioning Autism, what formerly would have been labeled as Asperger's Syndrome, but was relabeled in the DSM-V.

Understanding that these is this specific issue with my son has already been helpful for me in relating to him, and explaining to my eldest son, Lee, about why my son is acting the way he is, which has already helped stop some fights between the kids before they even started.

I think its important for people to be aware of their strengths and weaknesses and what makes them tick, which is why I explained about my son's Autism to my older kids. I tried to phrase it in a way that my sons wouldn't feel there was anything wrong with them, just different, and that different isn't bad, it just is different. Because of this, I talked to my kids using the terminology- neurotypical and non neurotypical- average brain vs non average brain. And I started off by talking about the concept of gifted kids, since that is something my kids are aware of, since all my kids are gifted (as well as myself), with the pluses and minuses involved.

I was really proud of how my talk went with them, how much they understood it, and themselves, and each other after their talk, so I wanted to share it with you too. I didn't talk so much about learning disabilities other than Autism, simply because the time wasn't right, but plan on discussing it with them at a later point.

Here's how I explained it to them.

My oldest is 8 and gifted, with many overexcitabilities (emotional and sensory sensitive) and my second is what is called 2e- twice exceptional- gifted and with a learning disability, in his case, ASD, and possibly some other things.
I started off my conversation with them by asking them if they felt the same as most other kids, or if they felt different. When they said they felt different from other kids, I asked them how they felt different, what they felt their differences were, and we discussed that for a while.

I talked with them about averages, and gave examples of how just like most of the world has brown and black hair, and then there are some people with red hair or blonde hair, and its just part of the variety of humans in the world, neither is better or worse, so too, there are neurotpical people whose brains work the same as most other people out there, and then there are people whose brains work differently than average, and its not better or worse, the same way blonde or red isnt better or worse than brown.

I told the kids that sometimes people who are neurotypical don't understand people that are not neurotypical, don't understand why we do things a certain way or see things a certain way, and people who are not neurotypical don't always understand why neurotypical people do things the way that they do. That sometimes can cause unpleasant interactions; sometimes people can be mean when they don't understand why someone is different- people generally assume that everyone else is like them, thinks like they do, and sees the world the way they do. And I told them about my experience growing up not neurotypical, how it was hard for me socially and scholastically. I mentioned to them that its often easier for non neurotypical people to make friends with other non neurotypical kids, which is why I seek them out for my kids to befriend, and why they get along so fabulously with certain friends. I love that with the internet, I am able to connect with moms of other non neurotypical kids, and am able to introduce my kids to theirs.

We talked about different types of neurotypical brains, chiefly among them giftedness, how their brain often works faster and comes up with connections that other kids dont, but also are more sensitive to certain things, etc.. and sometimes have a harder time with other stuff. How asynchronous development- being very advanced in some areas but very behind in other areas is quite common among gifted kids.
And then talked about autism, how thats yet another way brains can be different, and how they see the world from a different angle, which is why many of them are inventors or problem solvers or otherwise did things that made a big change in the world.

We talked about some of the challenges with autism, that because they see the world differently, sometimes they have a hard time understanding why someone else would see the world differently, and that can cause them trouble with friends and family, etc.... because neither side gets why the other side is doing something, and then people can be offended when the other one isn't doing things the way they think should be done.

We talked about Thomas Edison as well, and his educational background, and about how some suspect that he was on the spectrum. We also talked about different people they know and love, who is neurotypical and who is non neurotypical, and how that plays out in their interactions in the world.

And we talked about how the world needs all kinds of people, neurotypical and non neurotypical, that its part of what makes the world work well, that there is variety, some everyone has a different rask and role to play in the world, that we need all types, that no type is more important than the other, but we all have something positive to contribute.

I think that conversation went very well. I'm proud of myself. Since then, when Ike does things that gets Lee frustrated, Lee has come up to me and said "Is he doing that because he sees the world differently than I do?" and when I explain to him that that likely is the reason, we then include Ike and try to help Ike see things from the other person's perspective, and that's helped tremendously.

Now as for the future and how will this affect our family?

Well, there is a possibility that I'll be sending Ike to school next year (while homeschooling the rest) to a class that is specifically geared towards kids that have high functioning autism. Not guaranteed- he first needs to get accepted, and there are lots more evaluations and appointments and meetings until then, and if he gets accepted, then we'll have to decide if we'll send there, but its something we're strongly considering.

I just need to let everyone know that I respect my kids' privacy, and I did not post this without my son's permission. Ike said he would like people to know why he works the way he does, so they can understand him better.

And as for my husband and I- how are we taking it? We're totally cool with it. There are many wonderful people we know and love that have been diagnosed with high functioning autism, who are happy, successful, and in great relationships, so we're not worried about his prospects for the future. And this diagnosis doesn't change who Ike is as a kid- he's still the same awesome, funky, fun, loving, kind boy he always was- this just helps us understand his quirks a bit better. So that is a relief, to finally understand the reason he does what he does.

Anyone have kids on the spectrum or are otherwise non neurotypical? How did you explain it to them, or your other kids? How old were they when you explained it to them? How did they take it?


  1. Your father, sister and 2 brothers all have aspergers and have done well in life. Don't sweat it, it's different, not bad.

    Penniless Dad, COL USAR, FACC, FACP

    1. Best. Response. Ever.

  2. Beautifully written! As a special needs teacher, I often see how other children can be very unkind to those who are different. You did a fabulous job and I wish more parents would educate their children in the fact that different is not bad.

  3. my first reaction was that Ike was lucky to be born into your family. I'm sure you'll be able to help him reach his potential. I also admire your flexibility about homeschooling and willingness to consider school if that will be best for that child.

    Did you suspect the diagnoses? Did it come as a relief or didn't change anything?

  4. Your Text gave me goosebumps. Thank you for taking the time to share your talk with your kids, it was very touching for me. I think you and your husband are the parents the worlds needs more.

  5. Are you at all dismayed that the year he was in school they didn't catch this? Good luck!

    I have a child w/ a mental illness, and it is hard to explain to younger siblings what it is in a scientific context...they only see the "unusual" behaviors and given their age just slap on the label "weird".

  6. Great post. I agree with Penniless Dad. Diagnoses like ASD mean different, not bad. I am a special needs parent as well (my son has cerebral palsy) and volunteer with a special needs parent not-for-profit. I know several parents of kids with high functioning autism. These kids are funny, smart, thoughtful, and yes at times quirky. But who among us isn't QUIRKY!

    You're a great parent. Your son will thrive in your family.

  7. Agreed, Ike is so lucky to have you all. How well you've handled it.

    Husband and daughter both have autism and while it has complicated their lives (mine too haha) it has also given a depth and beauty of its own.

  8. It'll be ok Penny. You're a wonderful Mom to all your kids & they are lucky to have you!

  9. You are an amazing mother! My inspiration.

  10. You handled this with such sensitivity!!

    We have multiple family members in the extended family with ASD. Lots of ups and downs, but the ups have outnumbered the downs (or maybe it just seems like that in retrospect). Like Daisy, I like to think of us as a quirky bunch.

    I'm even more impressed that you got your son's permission before posting. Bravo!

  11. hi penny, when my youngest child was 4, I knew he was not like my other children. that was 20 yrs. ago, we had him tested, evaluated, and nobody ever told us he has high functioning aspergers, I read books on the subject and sent material to his teachers, and helpers so they would understand him a little better. when he was around 14 they finally diagnosed him as aspies, .
    he is now 23, learning in college. he does have problems with certain social skills. but he is fun, quirky, loves to joke. and very honest!
    when I knew that my son had aspergers, at age 14, I told my family, and his aunts, uncles, cousins. it was important for them to know that even though he is different, he is still one of them, and wants to be part of the crowd. one of the hardest parts is the acceptance by family, friends, . I hope that one day he will be able to have a home of his own.

  12. Penny, I find this young teacher to be so inspiring. Not all of his students have autism, but they all have different abilities and he is so positive. I thought you might enjoy. https://www.facebook.com/specialbooksbyspecialkids/?fref=nf

  13. I'ts a lovely and moving piece, well written. And I love the idea of your website too! Good luck.

  14. I sit on both sides of the "table" as far as the educational piece goes. I teach students with varying abilities, had a daughter that had ADD and Auditory Processing Issues (she passed away at 17 almost 3 years ago - I miss her every moment of every day) and I have a nephew on the spectrum. I firmly believe that because I have spent time on the "parent side" of the IEP (Individualized Education Plan) meeting, it has helped my communication with the parents of my students. Having said that, every single child/person is different....and every single child/person CAN learn. Best of luck to your family.

  15. A paediatrician I know off would say "congratulation, you have aspergers" when giving the diagnosis to his patients. So, Congratulation to Ike.


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