To Medicate or Not to Medicate?

Yesterday, I was searching for autism bblogs and stumbled across Pam Byrne’s blog. In one of her latest posts, she writes about her son’s increasing and then decreasing behavior problems. One of the things that stuck out to me was the tough choice Pam made to medicate Alex.

Back when I first learned aobut autism, it was through Autistics.org and other autistic advocacy sites. I was a firm opponent of medicating for behavioral control, believing that an autistic child or adult should be helped with proper supports, not dulling meds. Particularly neuroleptics (antipsychotics) can cause severe cognitive dulling and other side effects with autistics, so I reasoned one should stay away from those especially.

That was in like 2006 to early 2007. In July of 2007, however, I was about to move to a new city and into independent living. I was having terrible meltdowns related to this. My community psychiatric nurse suggested a psychiatrist’s consulttion, and I agreed. The psychiatirst listened to my story and thought for a bit. Then she started to describe what she thought medication should do for me, and I paged my inner pharma encyclopedia to find out what she might be thinking of prescribing. She suggested Risperdal, an antypical antipsychotic. I had little opportunity to change my situation in any other way – the move, that was one of the worst moves in my life, had already been scheduled for the next week -, so I felt I had no other choice but to consent to the medication.

This was a bad choice: I had quite serious side effects that weren’t being taken seriously, and the med was used to dull me into submission when in fact living on my own was not suitable for me. I tapered myself off the Risperdal two months into my new living situation. Three weeks later, I landed in a psychiatric crisis tht led to hospitalization.

The psychiatrist who admitted me into the hospital recognized the need for better supports rather than medication. I agreed and was med-free apart from a PRN tranqilizer now and then for over two years.

However, supports have their limits. Especially in a society that relies on massive budget cuts, it’s not like you can actually get perfect supports. I at least can’t. Also, I have always wondered whether medication could somehow help me reduce the overlaod that is actually quite inherent in my experience of autism. Medication should not be used to manage behavior in an unsuitable situation, but what if one’s support situation is as suitable as can be? Could meds actually calm the autistic mind when it is nonsituationally unquiet?

I asked to be put back on meds in early 2010. The medication suggested by my psychiatrist this time was Abilify, another atypical antipsychotic. And to be quite honest, I like it. I started at a very lwo dose, which had to be increased three times. Not always did I agree to this, in the sense that on occasion I’ve felt that supports could’ve been improved, but they won’t whether I’m on meds or not. I have minimal side effects even on a pretty high dose of Abilify, and I can tell, three weeks after my l ast increase, that I’m happier this way. So is Pam’s Alex. Of course, with a child or non-communicative or intellectualy disabled adult, it’s harder to tell whether the person is truly happier than with a person like myself, who can communicate reasonably well. This is why I still advocate taking proper care when thinking of putting a child or communicatively impaired or intellectually disabled adult on an antipsychotic. These meds do dull cognition, and it can’t be known in these cases whether the person is truly less irritable. I strongly oppose the idea that this is not important, except when a person is severely aggressive or self-destructive. In cases other than this, a person should only be put on meds if they’ll actually be feeling better. I do, and going on Abilify was therefore one of the better decisions I’ve made in my life.

18 thoughts on “To Medicate or Not to Medicate?

  1. Glad to see that you have experienced a comfortable middle. Going from the worst of meds to feel their affect on you and then experience something that you can tolerate and use as PRN is good.

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  2. My son has some severe learning disabilities and severe add. He asked to be put on medication and it has really worked for him. Medication may not be right for everyone, but I truly believe it is a personal choice. But if it works, I think that is great!

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  3. I have awful side effects to a lot of medication but myself I cannot work without some form of 'help' in tablet from – I wish I could and hopefully one day I will make to the point where I can say I'm medication free!

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  4. I agree with everyone that has commented so far. Always try a natural cure first…but natural cures don't work for everyone…just like meds don't work for everyone. I'm happy to see that you have found a middle ground and I hope things level out and go smoothly for you 🙂

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  5. I think that this is a very personal decision because side effects can be a serious consideration. It all depends on your quality of life, in my opinion, and how the medicine benefits outweigh those quality of life issues.

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  6. I think a person needs to do what they can. I have a lot of health issues and have been on loads of medication, off medication and back on. I did everything I could like changed my diet etc but I still have to take some medication. I think as long as it helps people need to do what they can to survive. You have a very inspiring story. I am glad you have gotten the help you needed.

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  7. It sounds like you have something that is working for you now and hopefully that will continue. I know someone else on Abilify and it is working well for them too.

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  8. I have always been anti medication but as I get older and my Depression/Anxiety gets worse I find myself needing it. I am making an appt to see my doctor now in sept. because sometimes you have to take the plunge and give it a try especially if not being on meds just isn't working.

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  9. with an autistic son myself we too as a family have come across this debate we dont want to however we wonder if it would ease things for him however im against as i want my son to be him just calmer yet dont want to medicate really its hard and still not decided 😦

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  10. I am so glad to read your post. My son is five, with Autism. We are struggling right now with his behaviors and he is in ABA and special day class. You're right. Services can only go so far. I have thought about medication, but to be honest – I have been so scared of them. He's verbal, but he has sensory issues. A side effect that makes him dizzy? Could lead to him not telling us, and seemingly "regressing." It's all trial and error huh?Thank you so much for your input. It's refreshing to see someone who deals with the same issues — and that it is working and doing well!

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  11. Glad to read this, as I never wanted to medicate my child either, but his anxiety and anger were making life miserable for him and for the rest of us in the family. A very low dose has taken the edge off his anxiety and HE doesn't want to come off them now, as he feels so much better

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  12. I didn't want to put my son on any meds when he was younger. They kicked him out of school until I did so. Then, a few years later, I took him to a different psychologist. He ran thorough testing and said that the original dr had misdiagnosed my son. I was so upset. My son had been treated for years as ADHD, OCD, and ODD. We found out that he has Asperger's with the last batch of testing. All he takes now is 30mg of Prozac daily for his anxiety. He is a totally different person now. He is happier and his moods are just like anyone elses for the most part. I wish I had stuck with my first opinion of not medicating him. He went from kindergarten to middle school being wrongly medicated because I caved in to pressure from school officials and doctors.

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