I really appreciate you sharing this, thank you. My son is almost 6 and your description of Tommy with the lashing out, causing damage and hurting you and the running from room to room is spot on for how my son is when he is in a meltdown. It’s so tough! We are in the process of investigating what else could be going on besides autism and wether to medicate so your article is perfect timing! Thanks again 🥰🙏🏻
Hi, just reread your answer to @James Hunt just wanted to ask, if the „process of investigating“, which you mentioned, was successful?
My son Jonas is often like that, too.
Although, he is 21 years old already, we just got the autism diagnosis in 2024.
He is nonverbal and needing diapers and has epilepsy etc.
In 2019, they found out, which genetic syndrome Jonas has.
It’s a very rare genetic syndrome and a spontaneous mutation.
Before, nobody knew, why Jonas was the way he was, but there was a hint during pregnancy that something might be wrong and that Jonas might not be healthy, but I decided against abortion.
I found out that getting an autism diagnosis, when there already is another diagnosis, a genetic syndrome, it’s very difficult to get the autism diagnosis in addition to the genetic syndrome diagnosis.
At least, that’s the way, it is here in Germany.
At the moment I am trying if Medikinet (Ritalin) helps Jonas and he is also on Risperidone since summer of 2020, when pandemic had started and his behavior got even worse.
I find it very, very difficult, to know exactly, if Ritalin helps him or not.
Have you found any medication for your son yet or have you decided that you don’t want to try any medication ?
Perhaps it might help Jonas, too, what you have found in the process of investigating?
Hi Nicole, thanks for your message. That sounds like you have had a really tough journey with your son, thank you for sharing with me.
My son is now 7.5y/o and has since my comment he has received an ADHD diagnosis on top of the autism diagnosis.
We only just tried medication for him in the last 6 months. First we tried methylphenidate (Ritalin) but this was unsuccessful, he became very sad and teary and it was horrible.
Then we tried dexamphetamine but over the course of a few weeks he became very violent and aggressive and was having meltdowns everyday. We had actually had a very calm period of no meltdowns and very little aggression before that. We stopped the dexamphetamine and he went back to being happy and the meltdowns stopped.
I think in the 3 weeks since we stopped it he has had 1 meltdown, whereas they were daily while medicated.
So that is our experience anyway. We have decided to continue with no medication for now. They did both help with focus and hyperactivity, but they took his joy.
I hope you can find some help for Jonas, he is lucky to have such an attentive Mum :-)
It is such a challenging decision to decide to try medication or to not try medication. It's a decision that comes with so much judgement from all sides- even from ourselves, teachers who work with our children, our partners, and other family members. My autistic son is now 29. I knew he was unique and different from the other children I'd known as students in my primary classrooms, different from the kids I'd babysat and different even from all the kids in the neighborhood and in his classrooms. In 2001 there wasn't as much knowledge about the autistic spectrum as there was in 2014 or as much knowledge and research as there is today in 2024.
We did begin medication when our son was 7. He was also self harming and using words about wishing he weren't alive. The meltdowns could last for hours. We had another child at home. We were desperate. We ended up sitting down with our son and explaining that we were beginning to understand that his brain worked differently than ours. We told him we believed that it was probably very noisy and confusing in his brain and we wanted to learn more and provide him some help. We were able to tell him that we hoped that medication could help quiet his noisy brain and allow us all to work together to find some other solutions.
It took us a year or so and many, many, psychiatrists to find the right medication, the right dosage and the right interventions but eventually we did find help that fit our family. For our family, for our son, for our situation, medical pharmaceutical intervention was helpful and allowed our son to be receptive to other interventions. It gave him greater access to the world around him.
Thanks for this honest sharing of your journey. I look forward to reading more.
I really appreciate you sharing this, thank you. My son is almost 6 and your description of Tommy with the lashing out, causing damage and hurting you and the running from room to room is spot on for how my son is when he is in a meltdown. It’s so tough! We are in the process of investigating what else could be going on besides autism and wether to medicate so your article is perfect timing! Thanks again 🥰🙏🏻
I’m sorry to hear you’re having a tough time. Hang in there. Glad you saw this when you needed it ❤️
Hi, just reread your answer to @James Hunt just wanted to ask, if the „process of investigating“, which you mentioned, was successful?
My son Jonas is often like that, too.
Although, he is 21 years old already, we just got the autism diagnosis in 2024.
He is nonverbal and needing diapers and has epilepsy etc.
In 2019, they found out, which genetic syndrome Jonas has.
It’s a very rare genetic syndrome and a spontaneous mutation.
Before, nobody knew, why Jonas was the way he was, but there was a hint during pregnancy that something might be wrong and that Jonas might not be healthy, but I decided against abortion.
I found out that getting an autism diagnosis, when there already is another diagnosis, a genetic syndrome, it’s very difficult to get the autism diagnosis in addition to the genetic syndrome diagnosis.
At least, that’s the way, it is here in Germany.
At the moment I am trying if Medikinet (Ritalin) helps Jonas and he is also on Risperidone since summer of 2020, when pandemic had started and his behavior got even worse.
I find it very, very difficult, to know exactly, if Ritalin helps him or not.
Have you found any medication for your son yet or have you decided that you don’t want to try any medication ?
Perhaps it might help Jonas, too, what you have found in the process of investigating?
Hi Nicole, thanks for your message. That sounds like you have had a really tough journey with your son, thank you for sharing with me.
My son is now 7.5y/o and has since my comment he has received an ADHD diagnosis on top of the autism diagnosis.
We only just tried medication for him in the last 6 months. First we tried methylphenidate (Ritalin) but this was unsuccessful, he became very sad and teary and it was horrible.
Then we tried dexamphetamine but over the course of a few weeks he became very violent and aggressive and was having meltdowns everyday. We had actually had a very calm period of no meltdowns and very little aggression before that. We stopped the dexamphetamine and he went back to being happy and the meltdowns stopped.
I think in the 3 weeks since we stopped it he has had 1 meltdown, whereas they were daily while medicated.
So that is our experience anyway. We have decided to continue with no medication for now. They did both help with focus and hyperactivity, but they took his joy.
I hope you can find some help for Jonas, he is lucky to have such an attentive Mum :-)
Thank you for sharing this Jamie ❤️
It is such a challenging decision to decide to try medication or to not try medication. It's a decision that comes with so much judgement from all sides- even from ourselves, teachers who work with our children, our partners, and other family members. My autistic son is now 29. I knew he was unique and different from the other children I'd known as students in my primary classrooms, different from the kids I'd babysat and different even from all the kids in the neighborhood and in his classrooms. In 2001 there wasn't as much knowledge about the autistic spectrum as there was in 2014 or as much knowledge and research as there is today in 2024.
We did begin medication when our son was 7. He was also self harming and using words about wishing he weren't alive. The meltdowns could last for hours. We had another child at home. We were desperate. We ended up sitting down with our son and explaining that we were beginning to understand that his brain worked differently than ours. We told him we believed that it was probably very noisy and confusing in his brain and we wanted to learn more and provide him some help. We were able to tell him that we hoped that medication could help quiet his noisy brain and allow us all to work together to find some other solutions.
It took us a year or so and many, many, psychiatrists to find the right medication, the right dosage and the right interventions but eventually we did find help that fit our family. For our family, for our son, for our situation, medical pharmaceutical intervention was helpful and allowed our son to be receptive to other interventions. It gave him greater access to the world around him.
Thanks for this honest sharing of your journey. I look forward to reading more.
This is so useful
I had to insist before I got a copy of the study that the MD was basing her assessment on. Unbelievably, it had a sample size of around 200. Tiny.
I enjoyed this post. I recently wrote about cannabis and autism, and I thought you might be interested.
https://drpetergrinspoon.substack.com/p/can-cannabis-help-with-autism
Thank you,
PG