A number of people wrote in on the post, To Medicate or Not with their experiences. The post was not about medicating autism, but about some of the co-morbid diagnoses that many people who are also Autistic have. Quite a few people wrote about managing depression, anxiety, stress and related issues. Some wrote about how they began trying different medications in their late teens… “I started medication at about 19… I started with Prozac and it went well for a while but over time it stopped working. It did make me feel better at first. From there and over the years, I have tried many different antidepressants for my anxiety- Prozac, Paxil, Zoloft,Trazadone for sleeping, Zyprexa, Cymbalta, Welbutrin, Effexor, and Nortriptaline.”
Many parents wrote about how they agonized over the decision to try medication and almost all of them said it was done as a last resort. Both Autistic parents and parents who are not autistic said similar things about their decision to medicate their child. One person wrote, “my autistic child is on ADHD meds and has been since he was four. AdderallXR until last year, now Vyvance (same med with less appetite suppression). Clonidine at night. He wants to be on them. He has told me he feels more creative and happy with his mind not looping fifty things at once.”
Another wrote, “I had been fighting the medication for a few years. I have had anxiety since I was little. I had the doctor refer me back to one of my psychiatrists who is willing to talk and if necessary provide a prescription. This time we tried combining medications. Welbutrin seemed to help a bit so we tried things like Ritalin to help increase its effectiveness. I was able to focus much better and things seemed to go well but I got severe heart burn as a side effect of the Ritalin. We tried Dexadrin next but it didn’t work. I gave up for a bit and then discovered Buspar. It is an antianxiety drug but not in a class like valium etc which are addictive. ”
Lots of people wrote about having to try many medications and often combinations of things before they found what worked. And a number of people wrote about being judged harshly by others either for taking medication themselves or for deciding to give it to their child. One person wrote, “…they do not know. They pass judgment, but have not lived the experience. They make comments and say things as though they have the answers, but they don’t. They don’t know what it’s like. They can’t. I’ve learned to say nothing and ignore the mean comments and loud whispers.”
Another wrote, “I don’t tell people anymore, because I’m tired of their uninformed criticism.”
Again, thanks to everyone who wrote about this. Really appreciate the honesty and willingness to share your stories.
Emma's Hope Book 
I was going to respond to this post yesterday, but didn’t find the time. Marisa and I are both on medications. I won’t go into detail, but suffice it to say we’ve had our ups and downs, trial and errors, but are now currently both on meds which I think help us both a great deal.
Sorry I haven’t been around much lately, I do still read you every day! I’ll email you soon and catch you up on everything that’s been going on. 🙂
xoxo
I was just thinking of you the other day and wondering how you were! Sending you love and want to hear all your news!! 🙂
Reblogged this on Sarah's Voice.
I guess to medicate or not depends on the kind of issues the child is facing a family member of mine who happens to be a doctor suggested I take Baclofen to reduce stiffness I decided against it I didn’t want to put God knows how many chemicals into my body for the rest of my life.
This post grew out of another post about what some autistic people did when they were in a meltdown. Some, at times, found the need for medical intervention. I want to point out that this does not mean they are sick. There are plenty of nonautistic people who need the same intervention when in a crisis stiuation. The world is not designed for autistic people, and that can make it hard. For years I thought the stress I experienced was psychological. Then, I thought it was that I was ill in some way. It is neither. It is my neurological makeup, that, when understood and excepted by me and those around me, is as much an advantage as a disadvantage. Unfortunately, that is not the reality of the big bad world. I cannot be naked when clothes hurt. I cannot avoid flashing lights, loud noises, or multiple conversations in one room. I cannot sing to communicate, instead of talking. I cannot skip on my toes instead of walk. I cannot engage with strangers in what is considered odd ways, even though these things feel very right and normal to me. So I work hard, very hard, at every day life, and look for any advantage I can to help me thrive. I have found that. Like Alice with her size- changing mushroom, I can take control of certain neurological responses, that make me just right. I am emphatically against the abuse and illegal use of drugs, and for blindly following a doctor’s advise. Make no mistake: there are perks invoved with doling out certain drugs. If you feel medical intervention may help, whether you are autistic or not, do the research and arm yourself with knowledge, and always, always, pursue a non-medical alternative. If I had a refridgerator on my foot, it would be far better to remove it than take a pain killer so I didn’t feel it. I cannot change the world, but I can gain a certain advantage by understanding my own neurology, and controling certain responses. I wish I could just have the world adapt to me, but that is not the reality, so I shall arm myself with every advantage I can find, and that includes a well researched, knowledgable choice of using meds, as little as possible, without shame. If we are wanting to remove stigmas attached to autism, then a clear open conversation is needed about the real life of autistic people, and the use of meds, and attitudes about it, is a valid part of this honest conversation. Thanks, Ariane!
Thank you so much for writing this, Chou Chou.
This is a great post Ariane. And I don’t think there should be stigma if a parent chooses medication and it really is best for their child. What I and others object to, is people using various prescription drugs and/ or biomedical intervention protocols, in an effort to “cure” Autism. Trying to manage some of the co-morbids are completely separate from that. It is quite understandable to treat illnesses. Researching these drugs and finding a very careful and competent Dr. is key, though. I would always seek as a last resort, but definitely not rule it out as an option if my kiddos need it to make life more manageable for them.
CMK – one of the things that really stood out with both this discussion about various medications and also the previous week’s posts about upset and the actions taken when people felt they had no where safe to go and when their emotions felt so overwhelming they went into fight/flight mode, was how all of these things are not just applicable to autism and Autistic people, but are felt by a great many.
Thanks so much for commenting.
Oh my gosh, this is a dear subject to me because I fought, fought, fought the idea of medication for years for my son, and then it got to crisis point. He was attacking people physicall y, saying he wanted to die, so anxious that would say the same word hundreds of times a day, bite himself, the list goes on. He wasn’t functioning. We couldn’t leave the house because he could explode at any moment. He was sad, he was miserable. Our whole family wasn’t functioning. He was out of school for 12 weeks. He got so aggressive that he made over 30 holes in his bedroom walls. We had to re wall the whole room. If he wasn’t being aggressive he was debilitated by anxiety and depression. When we finally saw the pediatric psychiatrist that specializes in autism I couldn’t help but ask myself why I had obstinately refused to even consider something that would could help just because it came in pilll form…… what were all those good reasons I had? I don’t even know. What I do know is that because of medication my son is down off the ledge. Everyone’s mileage will vary and everyone’s reasons are different, but for us when puberty hit it was a major game changer. I am grateful that the meds are available and helping.
I was on adderall for a bit, myself. I personally felt better when on it. I could think clearer and my focus wasn’t all over the place. However the prescription was expensive and anytime I went off of it between prescriptions I would get severely manic followed by extreme depression. This lasted a few days and then I’d go back to my normal level of semi-manic thinking all the time. So, I decided to go off of it entirely (until I’m financially stable enough to afford to not have to delay subscription filling at least). Overall, I am pro-medication that makes the person feel better.
The downside of the meds was that creative thinking took more effort but since off of them my focus is so broad and inconsistent that finishing any creative project is difficult anyway I felt no loss there. My boyfriend said that I seemed….calmer on the meds but more spaced out. I got the feeling he felt like I am more myself off of them and he may be right. I don’t know. I felt better on them, though and he seems to respect that.
I’d like to find meds that made me calmer without such an extreme change to my personality (meaning without making me seemed spaced out – even though I’m actually more focused and more able to listen when on the meds) and that didn’t have such an extreme effect on my moods when going off of them.