autism · soapbox

Autism, ADHD, Aggression and Medicine

Update Feb. 2, 2013: I’ve had three emails this week about medication and autism. I’d work on a better, more concise post about meds, but my DVR is running out of space and that situation needs to be handled immediately. So here’s my post on the subject from last year. If you have any resources you’d like to share, or blog posts of your own (Pro-medications or not, I’m open to all experiences) I would greatly appreciate it and will incorporate it all into a future post.

RAGE

Casey used to rage. He still does, but nothing like it was. When he was four, things were getting unmanageable. He’d rage for hours. He’d scream, he’d kick, bite, slap, punch and throw things at anyone who came within his reach. We tried everything. Every behavior modification technique I had learned in my psychology courses. I read. And read. And read. But every technique we tried only seemed to infuriate him more. Finally, our only resort was to clean out his room except for his bed. But even that, in one particularly bad rage, didn’t work. He ripped off the metal scrolls off of his bed.You can see it in the picture. We should have also gotten rid of those curtains before he did.

For years the teachers and paras at Casey’s preschool told me that we should put him on ADHD medicine. I refused.  I wasn’t going to drug my kid just to make their lives easier. I thought then that ADHD was entirely over-diagnosed. He was just busy. And he was autistic. His older brother, Carter, is incredibly “busy”. Always has been. We would use behavioral techniques because psychology combined with prayer can do anything, right?

Nope. It became clearer to me as time went on that Casey just. could. not. stay. still.  Not ever. There were too many things going on. Even when he slept his body couldn’t quit moving. And sleep was RARE.  So I gave in and had him tested. His teachers, his speech therapist and his dad and I filled out questionnaires. He had ADHD, and not just a little bit. It’s hard to see where the line between autism and ADHD is…if there even is one. For Casey, the ADHD was  something we could treat.

We tried out several medicines, monkeyed with the dosing until we got to the one we’re on now- vyvanse. Each kid is different. It sucks that you have to experiment on them, but it’s the only way to get to a good, even dose (update 2/13: there’s new genetic testing that can help determine which kind of ADHD medicine will help your child the most. It’s new, but most insurances cover it…post forthcoming).  At the same time, we put him on a sleep aid. We had tried melatonin in all it’s variety for months before. It helped for the first few hours, but didn’t last. He was usually up for the day between 3:30 and 4, after getting up during the night a half a dozen times. We put him on Trazadone. Trazadone doesn’t help him fall asleep so much as it helps him STAY asleep.

The difference was night and day. He could sit! He never could just SIT. We had never been able to sit through even the first fifteen minutes of church before I had to take Casey to the hall. I thought it was all the autism’s fault. It wasn’t. From that point, he really blossomed academically.  He started to read! The sleep was helping a bunch, too. He wasn’t so irritable. It was a Godsend.

But the aggressive behavior continued. It wasn’t horrible all of the time. Casey cycles. He would have a couple of bad weeks, then a couple of really good weeks. But by six, one of his cycles stopped seeming like a cycle and started seeming like a new normal. Something in him had changed. He was throwing desks at the other students. He punched his teacher in the face. And his aid. And the recess lady. I was going to his school every single day, usually to bring him home because there was nothing more they could do. He was a danger to himself and to others and they did not have the manpower to care for him.

Neither did I. Abby wasn’t yet six months old. She had her own serious health issues. I worried for her and the other boys’ safety. I worried about Casey. I knew he didn’t want to act like that. He’s a good, sweet hearted love of a boy. I knew he wasn’t happy. He just couldn’t control it. I ached for him. For the pain and turmoil he was feeling. I didn’t want him to feel like that anymore.

We took him to the Seattle Childrens Hospital Autism Center. They tried Guanfacine first. Guafacine is a blood pressure medicine. It’s off-label use is for children with issues such as Casey’s. It started to help a little, but as we had to increase the dose, he started getting headaches. We came to find his blood pressure was dropping too low. They suggested respiradone.

This to me was the mother of all scary drugs that I did NOT want to give my child. I thoroughly researched it. Years before I went to an autism convention and heard a lecture by one a neuropsychologist who was doing research into the drug. This was when Casey was four and was so aggressive. I spoke with him at length after about Casey.  He said that Casey’s form of autism responds very well to the drug and we should really consider it. I kept going back to that conversation. The doctor had given me his email and we had written back and forth over the years. He sent me literature that showed how much it had helped.

And I believed him. I didn’t doubt that there was a chance it could really help. It was the side effects that I was afraid of. I watched the PBS Frontline program called “The Medicated Child” and it scared me even worse. I knew very well that Casey’s brain was not completely formed and I was scared of what powerful drugs would do to it.

Respiradone is an anti-psychotic. It was first used to treat schizophrenia. Studies were done that found that it was hugely successful in treating aggression in children with autism.  We felt like there was no other choice. After a lot of prayer and a LOT of tears, I gave in.

And it’s changed his entire life.

Casey is mainstreamed this year with the help of his fantastic  teachers. He could have never been in a regular class without these medications. He still has his rages, but they are rarely violent. He’s able to control himself, mostly. It also has the side affect that it makes him hungry- which is good because the AD/HD medicine makes him not. He’s been able to maintain his weight. He still looks like a “stick figure” (in his own words), but we’re not worried about weight loss any longer.

I’m not sure what the future holds medicinally for Casey. We tried to take him off the Repiradone this summer (sort of because we didn’t have a prescription as we were traveling across the country…). It did not go well. I think I sort of hoped that his aggressive behavior was just a stage and that we were through it. But I think more now it’s a symptom of his autism.  I don’t want him to be on medicine forever. But I don’t think I’m against it, either. Not when I see what kind of good comes from it.

If you are having aggression issues with your child, it may be something to look into. This is just our story. Make sure you understand the risks involved and weigh those before making such a decision. But after hearing stories of families calling 911 because they were afraid of their 7 year old, I figured it was time I say something about the medicines. It doesn’t work for everyone. But it could work for your child.

14 thoughts on “Autism, ADHD, Aggression and Medicine

  1. I watched the medicated child too and thought it was very scary. My heart goes out to you. You have been through so much with your children. You sound like a great mom.

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  2. I'm glad you have found something that works for him (and all of you)! What a blessing to have him mainstreamed. I'm sure that's helping him grow leaps and bounds with everything!!

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  3. I am so happy to see this post! I'm a special ed teacher with a brother who has autism, and being on medications changed his life, too! He is 21 and is able to work and socialize with people. He has made amazing progress. I just hope that someday the media will stop making medication look like the devil, and show more of the positives. It is a last resort but not something parents should just refuse without research. It can change a child's life! Happy New Year 🙂

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  4. This is such an important post. We have been discussing meds for ADHD.Thank you so much for stopping by! I didn't know whether or not my visits made any difference and it is good to know they are welcome.Here is hoping for wonderful strides for your whole family in the new year! Bless you.

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  5. I just found your blog for the first time – so "Hi!."I used to have negative feelings about kids being on medications…..but, then I went to a presentation by one of the leading doctors in the areas of autism, add and adhd from Boston Childrens Hospital and was astounded by the research. The proper medication really can change a childs life. I'm so happy that you were able to find the right medications to help your son feel his best. I'm sure it is a gift to him and your entire family.

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  6. Great post! I think its important people remember that the same medication is not going to work the same for others. I am strongly against medication and trying alternatives first, but there absolutely are times when medication is needed. Research should be done and if there are side effects, try something else. I am glad Casey was able to find what worked for him and for you! 🙂

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  7. Thank you for this post. This makes me feel a bit more hopeful. My son is 4 and his autism diagnosis is fairly new,mostly because of the wait times on referrals. We knew it was the case for quite a while. So I am slowly learning all there is to it And, I swear you are writing about him.

    He can get so highly aggressive. He goes after me, his brother, anyone else standing close, flips chairs, throws things.. screams with such rage and all in the blink of an eye. It isn’t even something I can see coming sometimes.

    I recently talked to my husband about how worried I am for when he becomes stronger than me. I am a tiny person, only 5’2 and he is quite strong already. Sometimes it is nearly impossible for me to subdue him.

    I am not thrilled at the prospect of medication either, and I am sure it is not a decision any parents take lightly. All I know is, if it continues, something has to give and I need to know my options.

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  8. Risperdal has been such a life-saver! It makes the rage and aggression so much more manageable. It also helps with sleep problems. I joke that I would sell my soul to get it, if necessary. Is your son taking name-brand or generic? Our doctor has not had good luck with generic and makes sure we get name-brand.

    It’s hard to decide to medicate your kid. But, if you are desperate…… Think of it like this. Would you deny insulin to a diabetic or high blood pressure meds to people who need them? With the psych meds you are trying to “normalize” the brain chemistry to help the person function in society.

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    1. No, you don’t! Some of these meds are not typically used for kids, especially younger ones. Some doctors are hesitant to use them because there can be side affects. Kids have to be monitored to watch for weight gain, proper growth, as well as at least yearly blood tests to monitor some hormones. It’s always best to try to change behavior before bringing out the “big guns”.

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      1. Definitely! We’re trying to get our son set up with ABA therapy now, but it’s kind of a relief to know in the back of my mind that it’s not an “all your eggs in one basket” situation.

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  9. I don’t want him to be on medicine forever. But I don’t think I’m against it, either. Not when I see what kind of good comes from it.

    I feel this way as well. Thank you for this post. As I kind of feel like I keep the fact that John is on medicine a secret. I feel like I am doing something wrong and just trying to make my life easier. He also has the dual diagnosis of ADHD with a little OCD. He also had/has sleep issues. I would tell his teachers I had no idea how long he had been awake. He would have dark circles under his eyes. Also a lot of anxiety. He would stim doing miles of laps around the house. The final straw was after he saw his sister die. Anxiety went beyond through the roof. He takes focalin and zoloft. Not for me, but for him, it has improved his quality of life, I feel. He is mainstreamed and does pretty well. Is able to control himself and has a better school experience.

    Thank you for all of your research. In trying to deal with losing Madeline, family grief, I feel like I blindly said okay to the meds the Doc prescribed. Somedays it all feels like a crap shoot.

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  10. I found your post when I googled ADHD & Autism Medications. This has been very helpful to me in my decision making process for my non-verbal autistic 7 yr old whose rages have progressed since November. Thank you Thank you for your candidness. I am looking forward to reading your other posts.

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