A Plea from the Mother of an Autistic Teenager: Research Every Decision You Make Before You Make it
When our children are diagnosed we tend to go along with what the doctors and therapists say to do, as we should. We typically start a medication if they say to start it or end a medication if they say to end it. We do the same with various types of therapies. Over the years I have tried an enormous amount of medications and therapies for Autism with my son to try to better his quality of life. Much of them with great success rate, some of them with horrible outcomes. The biggest regret I have in all these years is not researching the medications that I was using extensively before starting them.
Not researching the Autism medications has complicated things to a degree now that he is older. One thing is for sure, it was a long road to get where we are today. A long road that is taking its toll on my son. Let me walk you down a bit of our path over the years.
When he was first diagnosed
My son was diagnosed with Autism at the age of 4 years 3 months. It was obvious for a long time before that though. He beat his head on everything, had no eye contact, no speech, wasn’t potty trained and had the other social and behavioral symptoms of Autism as well. We knew almost from age 6 months old that something was up. The diagnosis was still a shock for us though. It was like my world fell apart and needed to be put back together. Back then we knew even less about Autism than we do now. My son is going to be 15 this year, so I’ve been at this for a number of years. When he was diagnosed doctors still had the thought process that a possible cause could be the mother not bonding with the child at the appropriate time. As soon as this was said to me by a professional the guilt set in.
Here I was sitting at one of the most prestigious hospitals in the country and they are saying it could be my fault that my son has Autism. Or as they called it back then- “some kind of organic Autism.” We have since found out that his Autism has a genetic link to his father, whom has also been diagnosed with Autism. But I digress… I am sitting there thinking, I’ll do whatever these doctors want to do to make this situation that I created better. I was in my early 20s and naive. I didn’t even look up what the medications were for the longest time. I just gave him what the neurologists said to give him.
It started with Risperidone and Melatonin. Back then that was the starter cocktail for Autistic children whether they were boys or girls. We have since learned of some horrid side effects of Risperidone that luckily my son has so far escaped. The results of the cocktail were almost instant, but didn’t last long. Within a month he was starting to speak a little (mostly echolalias), coupled with speech therapy. He was also starting to sleep a little. Zain has never had a normal sleep pattern. Over time though we had to keep increasing the doses to get the same effect. They assured me it was normal, and it is; but, the problem with these medications are that eventually you dose out on them and can’t increase the dosage any further. You must try new medications, and that is where I found myself with my son by age 5. We had increased his dose over the previous year to find the right dose and now we found ourselves needing to try a different medication. This is where Seroquel and a psychiatrist came in. The neurologist said that I needed to find someone more suited to treat Autism. The hunt was on. It was a long, rough hunt too. If you think finding services is hard now, try doing it a decade ago.
After a few years
After a year searching and being on the waitlist for services we finally started with the new therapist and Seroquel. They added several other medications over the years to try to treat comorbid disorders that he has as well. We tried ADHD meds to no avail. We tried every sleep medication that was safe to give him; and, I later found out a few that weren’t safe at all to give him. One being Chloral Hydrate. For a long time, he was on 1000mgs of Chloral Hydrate a night, along with Klonopin, Trazodone and Seroquel. I’d give him his medication and it was like he was drunk, I’d bring it up to the psychiatrist and she’d say he just needed time to adjust. After 7 months I was tired of waiting for him to adjust.
It was about this time that I started writing about Autism to understand what was going on with my son and I started to learn a lot that I didn’t know. I consulted the therapist and stopped a lot of the medications he was on. I had, until that point, no clue that I could say no to these people. That I could refuse to go along with their medication plans. (Same with the schools.) You do not have to go along with everything these people say. You are your child’s voice, it took too long for me to learn this.
Learning that was key to my son’s development. I also switched to an Autism Specialist and have stuck to having one since. They understand the medications and their ramifications better than any other doctor when it comes to Autism. They live and breathe Autism and that is the kind of person I want treating my son.
Finding the right medications
We found the right medication combination by the time my son was 9. Geodon, Trazodone, Prozac, and Melatonin worked great for my son. He was speaking, potty trained and social on a level well below his peers, but social none the less. He was on this combination until we moved states and the new state refused to allow our son’s doctor to prescribe him the Geodon for technical reasons. With the move came the normal wait to even see a specialist, coupled with the halted medications that wait was horrible. Once that year was up the specialist worked his magic. Now he is taking Saphris, alongside a few other medications, and they work almost as well as the Geodon. The damage may be done though.
From years of seeing doctors that weren’t qualified to treat my Autistic son and my naivetes my son now has issues with anxiety and possibly with his heart. At this moment in time he must be attached to an “event monitor” to monitor his heart at all times, even in his sleep. This is basically a mobile EKG Machine. It is hooked up to a phone via bluetooth and sends readings directly to his doctor all day and night long. We think that it is a problem attributed to a medication that he was prescribed on years ago. If I had done my research in the past, then maybe he wouldn’t be going through this now. I am always going to be an advocate for medicating a child when needed, and my son definitely needs medication. I am also an advocate for allowing a family to raise their child without medications; provided it isn’t a greater health hazard to have them off medications than on them. Medications were pushed on me when my son was smaller because he was so out of control. It seemed like the only hope. Growing up we have noticed that with my son the benefits still outweigh the risk. I sure do wish someone had told me when he was first diagnosed that this could sort of thing could happen though.
I wish someone had sat me down and said to me, “Research, research, research every decision that you make for your child.” I must remind myself often that I was young, and this stuff he is going through isn’t my fault. Ultimately though, some of the burden falls on me. Always remember, the final decision is ultimately up to you in 99 percent of cases. You have the right to say, “Let me look into the side effects of this medication before we make any decisions.” You could even ask for a second opinion. My advice to any parent is to always research every decision that you make with your Autism team before you finalize it. Doing this is better than doing nothing and waiting in the dark to see what may happen later.