Medication and Autism

Chrissy has been having an unsettled couple of weeks for no obvious reason. I was concerned to see that two Paracetamol three times a day have been added to the long list of medications she's on. Since she's been in hospital there has been an increase in the number of prescribed medications rather than the decrease I'd hoped for. She has been on Movicol, a medication for constipation, for months now. Chrissy has never suffered from constipation at home, but medical professionals have advised us that she has shown symptoms on the ward &, like many of their patients, becomes very irritable when she needs a poo, & Movicol is an exceptionally gentle laxative without unpleasant side-effects. I have asked several times how much longer she needs to be on it but have been advised that it should continue for the forseeable future as stopping it would make her more irritable/cause discomfort. I want further reassurance that this is not a case of medication overuse & will mention my misgivings again.

Chrissy is also on Epilim & Topiramate for epilepsy but Epilim has been increased for withdrawal of Topiramate; her psychiatrist & neurologist don't like giving Topiramate to people with learning disabilities as it can worsen behaviour problems & increase confusion. She is on Quetiapine (an antipsychotic) too. It was started after she had nasty side-effects from Risperidone, the first-line antipsychotic given to treat irritability & behaviour problems in people with autism. Quetiapine initially increased Chrissy's irritability & triggered a period of unmanageably violent & self-injurious behaviour, & I see no evidence of any benefit now. It is on the list of drugs to be reduced or withdrawn. Then Prozac was introduced, which seemed to take the edge off - Prozac had worked well for her in the past alongside Naltrexone, an opiate-blocker that had eliminated Chrissy's self-injurious behaviour. The two together had dramatically transformed Chrissy's life when she was 14. We had been able to take her out & about anywhere, even on holiday to Disneyland (Now I can't even take her to the village shop.) but, ultimately, after several years, this medication regime had led to a life-threatening plunge in platelet levels. Doctors had withdrawn both drugs & only Prozac has been re-introduced, albeit at a lower level than she had been on previously. A further complicating factor is that Epilim can reduce platelet count in susceptible people too. The platelet problem may have been caused by cumulative effects of these drugs over several years. Chrissy also takes Cerazette, the contraceptive pill, as she finds the mess of periods & PMT unbearable, & fish oils, a natural supplement for brain health.

I worry about interactions between medications, as well as their individual side-effects & the fact that Chrissy has a history of adverse drug reactions. Chrissy certainly needs medication - I doubt that 'in the raw' she would survive because her epilepsy naturally occurs in clusters with very little recovery between each seizure. I'm thankful that anti-epileptic drugs ease her epilepsy – they don't work for everyone. As a child, before mood stabilising medications were tried, Chrissy's outbursts also occurred in clusters & could continue for hours, & exhaust her. I am loathe for Chrissy to have medications that aren’t absolutely necessary, as any parent would be. Before I’d learned that Chrissy had a chromosome disorder, I’d hoped dietary interventions could offer an alternative, reducing or even obviating, the need for anything but anti-epileptic medication, but the two we've tried - the gluten-free/casein-free diet & the few foods diet (under Great Ormond Street Hospital's supervision when she was little) had had no effect on Chrissy's behaviour. It goes without saying that behavioural intervention plans were the first approach & have been used for years.

Will we ever manage to stabilise Chrissy's behaviour again without chemically coshing her, or causing life-threatening physical side-effects? Am I chasing rainbows……?

A Communication Breakthrough

People with autism rarely use communication to share experiences. Chrissy is no exception & bypassed the pointing-at-objects developmental stage. She has never drawn my attention to a new discovery she's made or engaged with me about something she's observed. Until yesterday.

On the drive home Chrissy spontaneously reached for her symbols book & began leafing through the pages. We use symbols alongside speech & basic signs to explain what's happening next but she has never used them to initiate any form of communication with us. Until now.

Chrissy smiled and made eye contact to get my attention then pointed to a symbol saying 'Chrissy is going home on Saturday.' (Every home-time day is 'Saturday' to Chrissy). She then, in turn, produced the symbol for car, another one with a stick figure labelled 'mummy,' &, finally, a symbol labelled 'football pitch.' The former made sense - she was going home in the car with mummy. The latter puzzled me. I didn't know why the symbol was in her book. It looked more like a TV set than a football pitch....Then I twigged. 'Is it computer?' I asked. 'Yes!' Chrissy beamed.

I was enchanted - by the gentle way that Chrissy had shared her thoughts about what we were doing, & by the way she'd expressed her wishes for what she wanted to do when we got home. Our interactions felt primevally human & bonding, & touched me as deeply as last week's plastic spoon incident, albeit in a different way. Both experiences have given me a rare insight into my daughter's true thoughts & feelings, & inspired me to work even harder to give her the best life possible.

The next day, seeing a new crop of bruises on Chrissy's naked body as I bathed her brought me back down to earth. Self-harm is still a big issue & she is as volatile as ever. She did, however, at one point, remove herself to her room for time out, then emerged declaring: 'I've finished crying mummy.'

Again, on the journey home, Chrissy showed me the car symbol with a smile.

Chrissy usually acts purely on impulse & she must have tried really hard to develop her reasoning & communication skills to this level. I hope it's something that her psychologist, speech therapist & I can continue to build on.

Perfect Days

What a fantastic mood Chrissy was in tonight. No outbursts, not even a hint of one. I heard her clapping & cheering when I arrived to pick her up. I was told it was because she'd heard I was coming. When we got home she was chatty & playful, laughing at & interested in the antics of our two cats. Anxiety-related autistic traits were subdued - there were no bedtime rituals & minimal obsessive/compulsive repetitive questioning.....No, not a wonderful dream or wishful thinking. That's the enigma of Chrissy. It's a privilege to share these inexplicably 'perfect' times & they light up our lives.

Chrissy's Epilim has been increased as part of a programme to withdraw another anti-epileptic, with the ultimate aim of reducing the number of different drugs she is on. Could that be why she seems so joyful & relaxed? Experience tells me not....

Severe autism & social inclusion

Increasingly, we are finding that outbursts occur when Chrissy can't make us understand what she wants. If she sets her mind on something she NEVER gives up!

Problems at mealtimes are a recurring theme. Last night she couldn't wait for her dinner & kicked off for half an hour, screaming & self-harming on the kitchen floor. I wonder if we should change the time we pick her up so that she has dinner almost immediately after we arrive home. I could plan pre-prepared meals.

Bedtime issues have been resolved by us adhering to Chrissy's rituals - these include sleeves, no matter how short, rolled over, 2 pillows with top one being turned over twice, & blanket pulled up so Chrissy can feel it over the top of the duvet....It just took us a while to understand exactly what Chrissy wanted.

This morning Chrissy kicked off because she wanted a 'remote control' for her laptop. In the past, we worked out that 'remote control' meant mouse. This time, we finally figured out that she wanted the remote control for her portable DVD although she soon realised it didn't work with her laptop.

Chrissy has periods of repeatedly asking for something & we struggle to work out what it is, then there are periods of relative calm alongside magical moments - this morning when Chrissy got up she spontaneously asked me for a cuddle & last night she made funny noises that made me laugh, & kept repeating them to amuse me again - a charming, playful side we love.

I felt sad to see how many injuries she had from self-harming. A toe is so black & blue I cringe to look at it yet it doesn't seem to bother her at all, ditto a raw looking scuff mark on her shoulder. Her nurse told me that her behaviour has worsened since the arrival of a new patient on the ward - another severely autistic lady who is also very challenging. I was reassured that Chrissy isn't afraid of the other patient; adapting to another change in her environment could be a trigger but it could be coincidence - Chrissy has also emerged from a cluster of epileptic seizures. Sometimes she is calmer during periods of increased seizures - a pressure cooker effect recognised by epilepsy specialists.

Chrissy's mercurial moods are an integral part of her & massively inhibit social inclusion now she's an adult. Her environment is probably as good as it will ever be & obviously that plays a key role. What's so heart-breaking is that we have seen her much more stable than this for long periods with the addition of an effective drug regime. The question is can this ideal ever be achieved again & how much longer do we have to wait to find out?

Are you Mummy....?

....the question Chrissy asked me today while I was running her bath. She answered it herself - 'Possibly.' A learnt, meaningless word but funny & fairly appropriate nonetheless. Chrissy often does this - asks a question then answers it, & sometimes goes on to conduct a hilarious surreal conversation with herself using snatches of words & phrases overheard in others' conversations.

On the drive back to hospital Chrissy spent about 5 minutes shouting in my ear: "Are we going for a drive?!" Mozart's 2 Pianos didn't work but 'Forget You' by Cee Lo Green did (this time!). She suddenly stopped shouting & started dancing in her seat, her face wreathed in smiles. She can make you despair/furious/sad/exhausted one minute then switch moods in a flash & make you smile/laugh/feel full of love & gratitude that you have been blessed with such a child. Loving someone like Chrissy is an emotional roller-coaster as her mood swings are so all-consuming & unpredictable that you can't help mirroring them.

When I dropped her off, without a backward glance, she headed straight for the kitchen & food. So different to when I picked her up. Then, her face had flushed at the sight of me & she'd hugged 2 members of staff, laughing uproariously with joy....