Medicating Autism

We were somewhat apprehensive about medicating Isla who has autism.  Giving a central nervous stimulant to a 4-year-old seemed somewhat controversial. However we were willing to try anything to “fix” Isla’s autism. I thought if we just got the right medication or therapy she would all of a sudden be like all the other children. Ready to start school, start dancing and athletics and have play dates every week.  A large part of her “autisticness”  at that age was hyperactivity, ADHD, sensory seeking or whatever you like to call it.  She would run, not walk. Touch and explore everything with no idea of the consequence to herself or others. Find it hard to stay on task, or, if on a task that she enjoyed, find it hard to move off onto something else.  The looming school start date was a huge motivator.  With her being turned down for ORS funding, which would have allowed her to go into a satellite class, we were desperate to find a solution so she could start school.

Ritalin

So we started on a small dose of Ritalin, (Methylphenidate) which was dissolved in her milk before going to kindy along with her epilepsy meds.

At this age Isla could have a perfectly good day (for her) while having tantrums and falling asleep the next. It was almost impossible to establish the triggers for her behaviour on our specially assigned “Cause and Effect” Behaviour Chart.

When starting Ritalin this didn’t seem to change. She still was totally unpredictable with behaviour and mood. We did see some mellowing though, an increased ability to sit on the mat independently without cuddling into a teacher and not so hyperactive.  I remember being able to take Isla to the shops. For the first time she walked alongside me, holding my hand and not running off in all directions. We had a lovely time trying on shoes. That day is etched into my memory as was a pleasant experience. I really thought this medication was the answer. This was the sweet spot but the problem was the med was short acting and the rebound behaviour when it wore off was worse than ever.

Ritalin SR

Back to the Paeditrician and another script trialling a longer release formula.  This never worked as well. We could never get the dose right. The Paediatrician told me that until she lost her appetite the dosage was just homeopathic. I wish I had argued that now.

Fast forward a few months Isla had started school.  Yes she could sit on the mat at school some of the time but she would obsessively pick her fingers until they bled. She didn’t eat, she had lost her spunky personality, she didn’t stim (which could be a good or bad thing) yet her behaviours remained the same. Her autistic traits such as the inability to be flexible and not keep up with her classmates caused daily tantrums.  This resulted in her being removed from the classroom by her Teacher Aide.

Being desperate to make mainstream schooling work, we had no other choice but to trial different types and dosages of medications.  Other tools and resources put in place by the OT, RTLB, Teacher aide and Teacher weren’t really working for her most of the time. To read more about our school experiences click here.

Concerta

Our last-ditch effort was changing to Concerta. Another form of Methylphenidate but in a steady release form. This only came in a tablet form. A cylinder type tablet that wasn’t dissoluble or crushable like Ritalin had been. As Isla had no experience of taking tablets I researched everything of how I could get this into her. I got an Oralflo Cup, where the tablet sits in the spout so when you drink it goes straight down the hatch. The first dose was successful. She had a good day. That was it though. I could never get her to take another tablet. Believe me I tried everything. Was fairly stressful and Isla, to this day, will not touch any form of tablet or any form of medicine in a syringe type dispenser.  I would just use the Ritalin in place of the Concerta so nothing had changed.

By then enough was enough. We had lost our Isla by trying to make her confirm to what society expects. I decided no more. With consultation from the Paediatrician I took her off Ritalin. That day I took her to school in her fairy outfit as it happened to be mufti day. I introduced her to her teacher. I remember saying Meet Isla, my non drugged daughter.

At the end of the day her teacher rang me excited. She couldn’t get over this new girl. Full of personality, happy, more social, bubbly. A total change. She said however she couldn’t teach her as wouldn’t stay still so spent most of the day out of the classroom. I had my fears as I had left her spinning on the mat. I thought in time she might calm down after adjusting  to not being on the meds. But she didn’t and eventually we were moved to the Satellite Class at school where our lives changed.

I do believe Ritalin and other drugs like it have their place for some children. If Isla just had ADHD for example this could have quieted down her sensory seeking impulses to allow her to learn and engage. However it was not the right fit for Isla. She just wasn’t in the right environment to be herself, where she had the freedom to move around, stim to express her excitement, her sensory needs being met with breaks and play and her day planned with the use of visuals and routine. Once she moved to a class where she could learn at her own pace and feel secure this was much better for her.

Fluoxetine

I am not anti-meds at all. If your child had a heart condition you wouldn’t think twice about medicating for a deficit. The same applies with neuro dysfunction. Although we were a little nervous starting her on another form of medication, after a long chat with her Paediatrician, we decided to start her on another medication for her anxiety. An SSRI, Fluoxetine. 

Isla’s long time fear of ice had recently triggered a seizure. We looked into doing some sort of counselling for her but with children like Isla is hard to approach and can sometimes make it worse. She had done a study at school where she was desensitised and could actually touch some ice with a glove but when she was saw an unexpected frost on the field by our house was very distressing for her.  Isla’s anxieties had been growing with her as she was getting older.  This had started stopping her from doing a lot of activities she used to enjoy.

She is on a very small dosage but we have seen great results in Isla’s progress and confidence.  She is more articulate, less reactive and seems a little more willing to go with the flow. Her Aunty even managed a trip to Kelly Tarlton’s without a huge reaction to the ice there. 

Isla still remains on Lamictal (Lamotrigine) for her epilepsy which we dispense with the Fluoxetine in her milk in the morning. We have now progressed from a milk bottle to a sipper cup with the help of her assistance dog Bo’s arrival who quite liked munching on the teats of her bottles!

Everyone has a right to their own opinion about medicating, some prefer natural, diet based solutions and others the medical route.  What is your experience/opinion?

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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