Thursday, July 23, 2015

Where to Now? Medication and Paediatricians and Teenagers with Asperger's Syndrome

We've been taking our kids to see the same developmental paediatrician for a decade now and sadly he's moving to a less accessible place. Happily, he's such as great doctor that we'll still go the extra mile (miles) for him but our last visit did prompt the discussion;

Where to now?

I thought I'd share some key points of discussion with you because I know that so many parents are in the same position (not so much of losing a doctor but of having kids that are growing up).  It's probable that many of my readers have not yet have asked these questions.

Ritalin into the Future
Our eldest has spent a decade on Ritalin/Concerta and we can attest to the fact that it doesn't present any serious side-effects (at least, not in him).  We've always kept him and his brother off Ritalin on weekends except where there are events requiring significant focus.

We stop the Ritalin during the holidays too, with the aim being to allow the boys to fully "be themselves" and hopefully learn to self-manage their unfortunate outbursts and impulses.  Sometimes this works and sometimes it doesn't.

Arguably, the main reason that we continue to see the developmental paediatrician every six months is that in Australia, Ritalin cannot be prescribed by a GP. It needs a doctor with the right training and focus. As it turns out, this is a happy event for us because it means that we at least have one doctor who is fully across the development of our children -- something that has become difficult in these days of "medical centres" and the lack of "family practice" doctors.

Rather than simply discuss "where are we going to get the Ritalin from now", I wanted to go back to our original thoughts. We'd always assumed that the kids wouldn't need to be on Ritalin for the rest of their lives and to be honest, I'd expected that they'd be off it long before now.

We were told that most kids find that they need to stay on Ritalin until they finish school but that nearly all come off it in the years immediately following school, either in work or university/college. Our doctor said that in his opinion there were two main reasons for this;

  1. The post-school age kids are just that little bit older and more mature -- and this makes it easier for them to keep their focus on tasks and control their impulsive behaviour.
  2. Kids in the workforce or in tertiary studies are there not so much because they have to be but because they want to be there.  Usually these studies are in areas which are more aligned to their interests and as such, it's not so difficult to remain on task. 

I think these are both good points, I'd always assumed the first but it's only now that I've listened to the doctor that I feel that the second point is more important.

I've always felt that the best thing you can do for a person with Asperger's syndrome is to ensure that they follow their special interests.

Developmental Paediatricians into the Future
The other important point that our developmental paediatrician raised was that once kids reach eighteen (our eldest is turning sixteen in a few months), they are really classified as adults and he can't continue to see them but must hand them off to a psychologist.

I'd never really thought about this before because personally I've dealt with most of the symptoms of my own Aspergers via the internet and forums.  I don't need a psychologist because for me, blogging, writing and discussing things with my peers (who are also on the autism spectrum) is therapy.

Obviously this  kind of therapy won't work for everyone, particularly not for younger or less confident people who aren't necessarily ready to confide in others -- and who may not even "know" what is really going through their own minds -- yet.

I thought about the transfer process from one doctor to  another and I've realised that a complete handover could be quite traumatic for the kids.  I'm sure that these transitions are done with care, perhaps over six or so months but I can't help feeling that we're actually lucky that our paediatrician is moving away.

We're going to start the transition phase early and instead of seeing our paediatrician once every six months, we'll see him annually (and see a psychologist with a background in autism in the alternate six month period).  This will allow us to stretch out the transition period just a little longer and it will hopefully keep the two doctors in communication.

Given the trauma of recent years (we've had a couple of very difficult and unexpected deaths in the family these last years), it might be for the best anyway, to start the boys seeing a professional who is able to deal with the trauma that life and autism throws up.


LindaG said...

Down here in the US, all of our sons pretty much quit taking Ritalin in their mid teens of their own accord, so I'd have to agree with your doctors.
Only the youngest might still need it, but he doesn't like to take medicine unless he needs to and pretty much controls his outbursts.

Thanks for sharing your story.

drmjr78 said...

I found out at age 41, in early 2007, that I have Asperger's Syndrome. When I was 6-8 years old, I was diagnosed as being hyperkinetic, or hyperactive, so I was put on Ritalin for those 2 years, then afterwards, my parents took me off it due to the side effects (the Ritalin made me very sad, and I could not eat nor sleep - I was like a zombie!).

Gavin Bollard said...

drmjr78, your parents did a wise thing in taking you off the Ritalin. The "zombie" effect is a classic sign that the dosage is too high. Different people handle ritalin quite differently (and they handle it differently at different ages too). It doesn't mean that it's bad for everyone but it does mean that it was bad for you -- and for genetic reasons, possibly and children you may have had.

It's very important that parents of children on any medication keep vigilant watch for any signs of issues.

Anonymous said...

I have a 16 year old Asperger son on Vyvanse for several years now. Its worked great and I try to take him off during school breaks. The past few years I notice he is not so nice while he is on it. He is starting to notice too. I hope one day he can be off ADHD medication but he still needs it for focus at school. Learning that adults may not need it once they find something they like to do is inspiring.

Anonymous said...

Unbelievable that those poor kids need to be drugged to get themselves through school. What is the school doing to help them?
Outburst are telling you that the child had enough. There are more ways to reduce the anxiety. ...I know it will cost more effort from the neurotypicals.
I am constantly in contact with high school and my son manages to go through it ok as long as he can play basketball after school and not do a lot of homework. That works for him and he relaxes during sport (releases energy) and we won't have tantrums....

Helz said...

Wow, wow, wow. I knew my dad did right when he told me to do what I loved - and pointed to my older sibling who *hadn't*, and subsequently hadn't sustained their interest - but I never linked it to being aspie... just like I never linked my weird childhood eating habits to being aspie, or my "sulks" to being aspie (although it seemed obvious to me at the time that if I wasn't allowed to get cross and I had to be quiet, there was no way of me controlling my face!), or my physical sensitivity in some areas to being aspie... and I only recently realised that my "restless leg syndrome" is basically a socially acceptable stim... yep. This is very affirming and helpful for me