This month’s post in our Widening the Disability Perspective series comes from Flannery, who blogs with honesty and wit about life with her son Connor at Living on the Spectrum: The Connor Chronicles. I’m honored to introduce her as a contributor to the series.
My Son Connor: Living with Severe ADHD
My bloggy friend, Rachel, has been kind enough to ask me to guest post today and write about ADHD. She is so very smart, and a gifted writer, that I fear I won’t do her justice. Please don’t judge her awesome blog by my less than impressive writing. K? K.
Initially, I was going to politely decline Rachel’s request. Certainly, it wasn’t because I would deny contributing to the awareness she spreads, but because I can barely stand to think, speak, or write about ADHD. On my blog, I harness the power of humor and swearing to cope, survive, communicate, and escape from the reality of this disorder.
This thing, this ADHD, it runs our lives. It dictates everything about our lives, our schedules, our communication, our social life… It is the monster that cannot ever consume enough to be satiated.
My son’s ADHD was diagnosed three months before he turned four and was classified as severe. There was no surprise in this, as we had diagnosed him by age two, when he had stopped napping for good.
It’s not easy to convey the full impact of ADHD to people who haven’t experienced it in their family. The best way I can describe it is to say that my toddler could not physically stop himself from moving. He could not control his body or his mind, and at times it seemed like he was coming out of his skin. It was often painful to watch, painful to see my child miss out on the experience of real play because he could not stop spinning or running long enough to sit and engage with others his age.
With this in mind, and after careful consideration, we began medication. It helped tremendously in the beginning, before we discovered that his metabolism is unusually fast, and the positive results wear off in 2-3 hours. Since then, we’ve been on a roller coaster of trying different medications to help him, and we are still in the midst of that.
They say that ADHD never travels alone, which is an attempt at conveying to parents that there are usually other underlying disorders that accompany the diagnosis. Until we started medication, the ADHD was like a big, heavy blanket with tiny holes. It obscured the mild Asperger’s Syndrome that my son was diagnosed with a few months later, that had only shown itself as small quirks underneath the ADHD.
What is interesting and, perhaps, maddening about ADHD is that so many characteristics mirror those of autism. For example:
ADHD involves hyperactivity, which can also be a trait of Asperger’s.
ADHD involves an inability to focus for sustained periods of time, which can also be an Asperger’s trait.
Children with ADHD typically lag behind their peers in social and cognitive development by 30%, as do children on the spectrum.
Children with ADHD often lack impulse control, as do some on the spectrum.
If my son carried only an ADHD diagnosis, he would not receive an annual IEP and would not receive many of the special education supports that he does now. One could argue that because of the biology of ADHD, that it surely lies somewhere on the “spectrum” of disorders, perhaps at the mild end. But it is not classified as such, and so those children that do not have a secondary diagnosis struggle through school. In that regard, the secondary diagnosis has been instrumental in getting him support.
In my son’s case, it has been crucial to try to control some of the ADHD symptoms in order to address the deficits of Asperger’s. He is overwhelmed by stimuli, noise, movement, activity. He does not always understand facial expressions or nuances of speech, and will sometimes ask what something means, and sometimes not. Calling something by a different name, such as referring to a motorcycle as a “chopper,” is upsetting and confusing for him. Sometimes, a simple change, like taking a different street home, will cause him to become extremely agitated.
For a long time, we found ourselves studying a particular behavior and questioning whether it was “an ADHD thing or an Asperger’s thing.” We’ve come to realize that the two are intertwined, and the importance isn’t in the origin of the behavior, but in our response to it.
Of all the challenges we’ve come across, the single most challenging and heartbreaking one is the aggression. When frustrated or angry, my son will often hit or bite because he is not able to control his impulses. This has resulted in many dismissals from child-care facilities, and there is even one nationwide disability services agency that refuses to serve him because of the aggressive tendencies. So far, not one doctor or therapist can tell me if or when he might grow out of this. It his biggest challenge, and we worry that we will still be dealing with aggression when he is 12 or 14.
This may seem like a bleak picture. However, there has also been tremendous progress and growth in many ways. There have been great strides in introducing new foods to his limited menu, huge increases in vocabulary, and a growing awareness of how his actions affect others. In short, despite the continuing challenges, there is forward momentum.
As our son ages, we can only hope that his hyperactivity lessens and his focus increases. With his amazing sense of humor, zest for life, and boundless energy, he is surely destined for great things once he learns self-control.
In the meantime, we work diligently with his psychiatrist for medication monitoring, and with his behaviorist who teaches him social skills. The road is long and winding, but the view along the way isn’t always dark. It’s also full of surprises and laughter.
Flannery,
Thank you for sharing your experiences. My son has Asperger’s and ADHD is a part of our lives, too. While he is not diagnosed with ADHD, stress, illness and transitions awaken symptoms that we struggle to cope with.
I wish you and family the best.
[...] make sure to stop by Rachel’s blog and check it out. She has tons of great posts, and a lot of excellent information about [...]
I’m glad you accepted Rachel’s request to guest post. You’ve brought to light just how intertwined the two really are making it near impossible to really distinguish between the two. We deal with the aggression but for us it seems to come out as a total lack of understanding the other emotions. And too, when he has lost the ability to control his emotions/in the midst of a meltdown.
I sometimes think I see the anger as it’s the most identifiable, easily recognizable or the emotion that gets a quick response. My son sees that and learns that anger is the emotion that gives a release as well as gets my attention. Fast. I mean how many times do we come to swift actions or drop everything when they giggle or flash a smile or if they’re just behaving as they should???
I hope he will grow out of it as well. Or he at minimum will be able to acquire skills to help him regulate his body/emotions. I’m hoping all those hours in social skills classes and all the work we do at home will pay off!
Thank you Flannery!
I read in a book about Adults with ADHD that ADHD is more impairing than most think – it’s more impairing than depression, anxiety, and several other common disorders.
I think one of the reasons that autistic people display many symptoms of ADHD (such as hyperactivity, inability, to focus, etc. as you list) is that there is an extremely high rate of comorbidity between ADHD and ASDs. Research I’ve read says that 60-80% of people diagnosed with an ASD meet the criteria for ADHD as well.
I think I read another statistic somewhere that approximately 20% of people with severe ADHD also meet the criteria for an ASD.
Anyway, this post is an interesting perspective to me. I have been diagnosed with AS and ADHD myself, although I wasn’t diagnosed with anything as a child, and my ADHD isn’t severe (although I was very hyperactive as a child).
One thing I’ve noticed on my part is that overload can sometimes trigger a lot of restlessness/apparent hyperactivity along with everything else it causes. I don’t know if this is relevant to your son, but it is something that’s been a bit of a trial for me at times.
Lisa, yes he does get overloaded, but even in our quiet home, he is bouncing off the walls. It’s pretty severe.
As an adult, I was diagnosed with Aspergers. More recently they’ve added the diagnosis of ADD. I also have issues with depression and anxiety. I wish you the best of luck.
Thanks everyone for your support and kind words!
I’m also glad you accepted, Flannery–you were very informative!
Flannery,
Thank you for bringing attention to the similarity between ADHD and Asperger’s. This contributed to an initial wrong diagnosis in our case. I am glad more people are starting to recognize the subtle traits that are simiiar and how sensory sensitivities contribute to some of our children receiving the wrong diagnosis.
This was a great post. My son has ADHD and Aspergers and some days are definately harder than others. I’ve found medication seems to help, though he’s still always jittery. But the medication allows his brain to slow a little so he’s able to do homework. Without it, there is no way he’d get anything done.
This was really informative, I’m also really happy you accepted. I don’t know much about ADHD and had no idea how intertwined it can be with ASD. It’s certainly brought more questions to my mind… Great post!
I had no idea how closely linked and alike ADHD and ASD are. Thank you for sharing this. I’m so glad that you’re seeing progress and I am extremely thankful to have found you, my friend.
Wow – it sounds as if you are describing my seven year old son. Who has severe ADHD and Aspergers as well. Dismissals from childcare and schools, bouncing off of walls (yes – literally – lol), and extreme aggression were a daily part of our lives. It was exhausting to say the least. He is now 7 and with a combination of medication (done by a very savvy doc at the Mayo Clinic) and PCIT therapy our lives have changed 180 degrees for the better. Wondering if you have heard of PCIT? It was a lifesaver for us!!! Email me if you want and I can tell you more!
Thanks for your post – I’m glad you didn’t turn it down.
It seems extraordinarily unfair that children with ADD and ADHD do not receive the benefits of an IEP. Of course, I believe all children should receive an individualized education, instead of a standardized, one-size-fits-noone approach. But ADD and ADHD impair learning if not adequately compensated for, and that should be addressed by the schools. A lot of the strategies that help my autistic children do better in school could help my nephew do better in school. But he does not get those same supports.