Have you ever considered medication?

Autism, ADHD, and medication - Our journey

“Have you ever considered medication for Jude?”

The voice inside my head was screaming, desperate to be heard

“Medication, of course not. There’s no f*ing way that I’m giving my son medication and turning him into some drugged-up zombie.”

They’re not the exact words that came out of my mouth in reply, as my public voice is much more polite. Instead, I mumbled, “No it’s not really the route we want to go down.”

This question came up during a meeting about Jude’s progress at school, way back in 2014. This wasn’t one of your regular parent evening meetings where you get to discuss handwriting, reading and maths. We’ve never had one of those meetings.

Instead, our meetings back then involved about 10 people. So many that I’d walk away trying to remember exactly what it was that each person who was there actually did.

We were in crisis. Jude was only 6 years old, but already he’d been struggling for well over a year. He was having regular meltdowns each day where he’d self-injure. Hurting himself over and over. It was heartbreaking to watch. I couldn’t get my head around it. Why would anyone want to do that to themselves? Why would any 6-year-old want to do that to themselves?

That was the point that medication as an option was brought up

Medication is a topic that still feels taboo, especially when it comes to facing the choice of medicating our kids. It’s a topic I get a lot of questions about from parents. Desperate parents, who are doing everything they can to help their kids who are struggling to cope in our everyday world. Parents battling with their own thoughts about medication, and what those close to them might think.

Medication stirs up a lot of emotions and can be divisive. Emotions that are bound to our own beliefs, experiences, and stories we’ve heard or read about others. I was the same. After all, my instant reaction to the subject even being broached conjured up images of it turning Jude into a zombie. Looking back I’ve no idea where that thought originated, but that’s what came to mind straight away.

It’s a topic too complex to try and explain in hundreds of individual Instagram and Facebook messages, so I’m going to share with you here our experiences around medication for Tommy and Jude. Every family is different, every family has to make the choices that they feel are right for them and for the individual.

For some of you reading this, medication might already be an essential part of your everyday routine for you or your child. For others, you might be shocked and horrified even at the idea that a 6-year-old might be on medication for mental issues.

That’s the reality of the size of the challenges that Jude had been having, that an anti-psychotic medication was suggested as a possible solution for him.

This is simply a story of what’s happened to us since those dark days in 2014…

Like I said, we were in crisis. The reason we were in that room was a reflection of that. Jude was having regular, multiple meltdowns each day. Big, long, aggressive, tear-filled, wild meltdowns where he was out of control, and really hurting himself.

What began with bouncing around the floor on his knees, turned into him slapping his arms and legs. When this wasn’t enough to satisfy him he began to take his anger out on walls and radiators, slamming them with the back of his hand. This was soon followed by slapping himself around the face and then repeating all of these behaviours with his fist.

When Jude was having a meltdown and the red mist had descended, there was no filter. He slapped and punched as hard as he could, even if it was against a wall. It was like he would lose all control and sense of reality, and this was the only way to (eventually) regulate himself again, when the tears had run out, and he had no energy left to do any more damage. It was heartbreaking to watch.

He’d wake up in the middle of the night, and the first thing he would do was start screaming and hit himself (or me as I lay next to him.) He’d have meltdowns at school and at home. Morning, noon or night.

We tried everything we could. Checked his teeth, went for medical check ups to try and discover if he was in any pain. Tried sensory strategies, a gluten-free diet, lessened demands, filled his days with all of the calming, happy things that he enjoyed. Still the meltdowns came.

Some triggers were obvious. Sudden sounds, other children and their unpredictability. His brother Tommy. We did all we could to reduce and remove them from his day. The meltdowns continued.

All you want to do as a parent is find a solution. You want your child to be happy. You want your child to never feel the need to hit themselves ever again. You want to stop living in fear of your child breaking a bone from slamming his hands against a radiator in anger.

And so the issue of medication never went away either. We discussed it further over those difficult months. School were a great sounding board, sharing their own experiences of pupils at school, and the positive impact it had made in the pupils’ lives (and were honest that for some it hadn’t) We were told it could be a long process to be approved anyway, so we got it started.

During that time we did our own research and met with various professionals. Behavioural analysts, child psychologists and doctors. It took nearly 2 years to go from a topic of discussion to a place where we actually had a decision to make. The different departments and experts were all in agreement and ready to trial some medication, so it was down to us to decide what to do.

We had gone through the potential pros and cons time and time again during that period. In the end, we felt that we owed it to Jude to give it a try.

Looking back, I think my own feelings came down to this.

If I chose not to give it a chance, wasn’t I just being selfish to my own feelings rather than what could be right for Jude?

If Jude had some kind of disease or illness wouldn’t we give him whatever medicine he needed to make him better?

If he has a chemical imbalance within his mind causing this extreme anxiety shouldn’t we do everything we can to try and help him reduce this and improve his way of life?

I fully accepted that autism is a part of who Jude is, and medication was in no way trying to cure or change that.  I also knew that his life could be so much better than it was right then.  Watching him hurt himself every day, looking so lost, angry, and out of control, surely he deserved more than that?

If medication could reduce the amount of anxiety he felt going about his day-to-day life, if it gave him that little bit of extra help he needed then surely it was worth a shot.

And so, we did.

Jude started on the lowest dose possible of Risperidone, and over the coming months, we were in regular contact with the Paediatrician to try and establish the correct dose and ensure there were no side effects.

Now, I wish I could say it was a perfect solution, that suddenly the meltdowns ended. But it’s not quite that straightforward.

The first few months, it appeared like it was working. There was a gradual improvement in Jude’s anxiety and behaviours. Meltdowns were happening less often and with less intensity. When they did happen Jude managed to snap out of them quicker than he ever had before.

As the bruises began to heal, the smile stayed on his face for longer. Life became a little easier, being a parent a little more fun.

Jude started to cope better with the outside world, which meant we could do more together. We spent a lot of time outside, walking along the river, or going to the park.

Then, suddenly, after about 6 months of gradual improvement, things took a turn for the worse.

Things got so bad that we thought the medication wasn’t working at all, and we should come off it altogether. Then just as we were in discussions to phase it out and try something else instead, life improved a little again.

It coincided with a number of factors. A new house, living apart from Tommy, the school holidays and being away from his classmates, and lots of 1-1 time with me or his mum. But that summer things got a lot better, and they’ve never been that bad ever since.

This doesn’t mean that Jude doesn’t suffer from anxiety. Or that he can always cope with all of the situations that he struggled with before the introduction of medication. How I wish that was the case.

There have still been meltdowns, there have still been challenging periods, but they’ve been so much more manageable. Over time they have become less frequent, less aggressive, much shorter in time and lower in intensity.

I see Jude’s medication as just taking the edges off a little. Increasing his tolerance level a bit, or enabling him to start from a lower state of anxiousness each day.

When he does get upset now, which in itself is rare, it’s more tears and anger, rather than self-injurious behaviours. And has been for a long time.

Naturally, when things are going so well, after a while you start to wonder if the medication is needed. If it’s actually doing anything. And so we’ve tried (following medical advice) to phase it out, come away from using it altogether. But each time, within a few weeks we’ve seen a noticeable change in behaviour and started once more.

A few years after going through this process with Jude, we would be having similar conversations around Tommy. We thought from an early age that Tommy had ADHD. Being a very different personality to Jude, he was often very hyper.

Whilst he loved doing school work, puzzles, games and activities, it was very difficult to get him to focus. To stay still. In between each puzzle piece he slotted in he’d be up and bouncing around. Forever jumping off stairs and furniture, flitting from one thing to the next.

We tried sensory strategies and various sensory diets, but they didn’t even touch the sides. It was as if he was uncomfortable in his own body, and forever trying to compensate for that.

Whilst we explored an ADHD diagnosis for him (which they wouldn’t consider before he was 7 years old) there had also been a real surge in aggressive behaviour. Just as Tommy and Jude’s personalities differed, so did their actions during a meltdown.

Jude was very emotional and would take out most of his frustration on himself, only really lashing out if I got too close. As awful as it was to watch, it was predictable and containable. I could transition him to another room where it was safer, or the car to listen to music, which would help him break the cycle and calm down.

Tommy was the complete opposite. He would very rarely hurt himself, instead, it was much more external. Intent on being destructive or lashing out at me. At times it was relentless. Frightening. If I tried to stop him damaging the house he’d turn on me. If I protected myself he’d return to trying to break something. Running from room to room in the house. If we were outside it became increasingly difficult to keep Tommy safe if he had a meltdown.

It was so hard to watch. So hard to be on the receiving end of. Just as it felt like we were making headway with Jude, we were going through it all over again with Tommy.

Which, in hindsight made it a little easier the second time around. I’d experienced all of these emotions before, knew the strategies to try, the people to talk to. So when it came to the discussion of medication to try and make life better I was ready for it.

We began with Risperidone to help relieve some of his anxiety and reduce the aggressive behaviours. Which, definitely made an impact, but wasn’t doing anything to help with his ADHD.

The next challenge with Tommy was getting the medication into his system. A lot of the ADHD meds we were offered were in tablet form, which he refused to try and swallow. So we had to break them up, or empty out the capsule, disguising it in yoghurts or a drink.

Which worked sometimes. But once he’d realised that there was a powdery substance in his yoghurt, he’d simply stop eating them.

We tried some liquid versions, again mixing it in with a drink, but Tommy could smell or taste the difference and would refuse to drink it.

Eventually, we tried Clonidine, and he accepted it. We were able to mask it in some juice, and within a few weeks, he was in a routine of taking it.

Over the last few years there’s been some adjustments. To the dose and frequency, but life is so much better than it was 4 years ago. So much so that we were soon able to phase out the Risperidone and only take Clonidine.

Fast forward to today, and both boys are still taking medication. For us it’s been a very positive experience. The difference it has made to their lives, to our whole family’s lives, is clear to see.

But it isn’t the medication alone that has made life better. In my opinion, it’s lowered both Jude and Tommy’s anxiety levels to a point that has meant all the other work we do each day has a better chance of making an impact.

The sensory activities, the routines we follow, and the adjustments we make, all seem to have a better chance of working, because they are in a less anxious state. Because for Tommy some of his impulsivity and hyperactiveness are a little more controlled.

We still have our difficult days, weeks and months. Both boys still have meltdowns when things go wrong and they are overwhelmed. But they’re less often, less intense. It seems like they both have a much greater tolerance to the world around them than they once did. They’re much more relaxed than they once were.

And so we’ll keep going. Maybe we’ll need medication forever, maybe one day we’ll be able to phase it out. Either way, Tommy and Jude are both much happier and much more able to access the world around them. Which in those darkest of days was all I ever hoped for.

**Side note. Everything I’ve said above is our personal experience. Medication is a personal choice, one that needs to be made after a lot of thought and consultation. I know families who have had very positive experiences, and others who have found it’s made little difference or had negative effects. I simply hope that what I’ve shared helps break the taboo around a subject that we should be able to discuss openly. That it helps other families who are battling with this difficult decision to realise they’re not alone.