I don't often talk about specific issues with my kids on this blog preferring instead to tackle general topics which could benefit everyone. (and of course, I try to protect their privacy a little).
I'm going to make an exception in this case because it illustrates perfectly some of the issues and decisions which parents of special needs children face all the time.
My eldest son, aged almost 12, is in year six, his final year of primary school. He's been in "special needs" since kindergarten seven years ago and on ritalin almost as long.
Over the years we've had our share of school issues, both social and academic and it takes each new teacher nearly an entire year to understand him.
It was always our hope that one day, when he was old enough to "self-regulate", we could ditch the ritalin and I think that we all expected him to be off it by now.
There have been many times over the years when we've forgotten the ritalin (or run out). Usually in those cases we get a call from the school pleading for him to be medicated. The behavioural change really is that noticible. Of course, throughout most of this time, he's been off the Ritalin during the weekends - except when he really needs it, such as when he's at tutoring.
I've noticed big social differences without Ritalin on weekend scout camps. He's usually still a little medicated on Saturday but by Sunday he's entirely off the medication. He becomes disorganised, impulsive, defiant, outrageous and funny.
I noticed on one camp that the other kids had issues with his Jekyll and Hyde style personality differences and I took the unusual step of sitting a few of the smarter kids down and explaining why. Interestingly, this changed the attitudes of the whole pack towards him and he became much more accepted.
Recently, we ran out of Ritalin and he was off it for a couple of weeks. We finally managed to get more but at the parent-teacher interviews a week or so later, we were told that "he's better without it".
Apparently he's far more social and interactive when he's off Ritalin. That much I'd picked up from the camps. The teachers said that when he was on ritalin, he didn't interact much but when he was off it, he would be walking "arm in arm with girls".
They also told us that when he was on ritalin, it was a struggle to get him to do anything in terms of work and class participation but when he was off it, it was hard to get him to "shut up". They preferred the latter state.
It was all going really well and we were pretty much convinced until I asked about his academic performance. I was stunned by their reply; "well, he's not learning anything anyway".
Nevertheless, we decided to take him off ritalin - and so began a few weeks of calls from the headmistress of the school to report; fighting on the bus, flipping the bird at a teacher (and the list goes on). We got nothing negative from his main teachers who were very happy with his active participation,
Our weekend tutor however was not happy. Her focus is academic, not social and she's a critical part of my son's learning. We've often said that he learns more in an hour per week with her than he does in an entire week of school.
Not only was he extremely unsettled but there were tangible measures too. He took twice as long to read a regular (timed) passage and retained considerably less information about it.
It seems that there's no one winning formula but that we have to adjust the dosage independently for different activities. At this point, we're considering a much lower dosage for school (or none at all) and a "normal" dosage for tutoring. We've also asked that all playground and bus-duty teachers be informed that he won't be as "in control" of his impulses as usual.
It's tricky but I'm much more worried about next year when he will be at a new school and with a different teacher every hour. Are they going to be able to reach a consensus (medicated or unmedicated)?
I sincerely doubt it.
Comments
As for the transition next year, we are going through that now. So far, it has been smooth. We went through a lot of preparation at school before the year started. Meeting with office staff, meeting with his teachers. So far, so good.
I want to thank you for your blog. It was the first AS blog I started following and you have been instrumental in helping me understand what is going on in my child. Thank you!
Laura
Many autistic people don't learn the necessary skills they need as adults, like controlling and learning their emotions, because they were drugged with medications that controlled those things for them.
If a child always takes something for aggressivity and stops as an adult he can become more aggressive because he will never have learned how to manage feelings.
Medications stop autistic people from learn the emotional regulation skills they need because it's the drug that controls the emotions.
Just writing this because you believe your child will learn to self-regulate while on drugs but that can't happen since he is medicated with things that manage things for him, he can't learn to self-regulate if he doesn't use, test and naturaly develops the skills to do it.
There is evidence that when adults that always took medications stop taking them they will be stucked on early emotional states of development, even going through puberty and having problems related to developing sexually too late, the emotional skills of a child or teenager on an adult, for autistic people that's even more complicated since we learn differently.
I think that's why many insist that meds should be used in children only to make the child's life easier if the child is suffering and not to make the child easier for the adults that work with them since that's make the child stop learning important things like emotional regulation.
Self-regulation doesn't come with age but with learning skills and testing them in a child's development.
First of all, there is no medication for autism, so autistic people have no need of medication. Medication is only used to help keep co-conditions, such as ADHD under control.
Secondly, while I hear what you are saying regarding the reduced ability, Ritalin isn't a drug which removes choice altogether. It simply gives the child a little more time to process their responses.
Without Ritalin, my son is at the mercy of his impulses. With Ritalin, he is still able to choose right or wrong responses but at least he has time to consider the consequences.
In that sense, it helps him learn to self regulate as he's building up a series of acceptable "automatic" responses.
The hope is that once he's off Ritalin (or on lower dosages) he will increasingly rely on past experience to resolve issues.
I found your blog just the other day, and I have a question. Since you are Aspie, how did you know your son was ADHD and not Aspie? That is a relatively new diagnosis here in the U.S.
We can see several symptoms of Aspergers in our youngest (now almost 25); and wonder if that might have been a more appropriate diagnosis when he was much younger. They are symptoms we now realize he has had all his life.
Thank you for your blog.
My son was first diagnosed with ADHD (Inattentive). Back then it was simply called ADD.
He received his Asperger's diagnosis a few months later and we talked to the Doctor about whether or not it replaced his ADD. He told us that it supplemented it.
My son also received a diagnosis of NVLD (Non-Verbal Learning Disorder) - Essentially this means "a learning disorder which isn't related to speech". The layman's term for this is; "Learning Difficulties".
You'll find that Asperger's syndrome comes with a whole host of co-conditions which vary from one person to another but are essentially "lite" versions of real disorders.
For example, many people with Asperger's syndrome show signs of OCD but only some of them show signs which are excessive enough to impact their quality of life.
Those whose co-conditions impact their quality of life are said to have the condition while those who simply have strong preferences for structure and order are said to have a co-condition.