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l Studies looking at varied populations – for example, a mix of people with autism, PDD-NOS, Asperger syndrome and even Rett syndrome – that combine results as if they apply to alll Studies that downplay side effects, as though the symptoms being attacked with medication (symptoms that bother other people) are more important than how unwell a medication makes a person with autism feel, or whether it threatens their physical healthl Studies that are very short in duration, too short to see whether the side effects known to accompany psychiatric drugs in other populations will emergel Results from studies that looked only at adults being used to support the prescription of drugs to developing children.

What can be said about a drug like risperidone when a frequently-cited ‘long-term study’ (Troost et al, 2005) turns out to have lasted just eight to 16 weeks, and to have looked at patients aged five to 17 with a variety of autism-spectrum diagnoses? The evidence for some other medications is even worse, consisting of short-term case studies of just one or a few patients (Posey et al., 2008).

Indeed, many drug studies are quite unclear in design, reporting a wide range of behaviour changes in their small groups of subjects and then lumping them together as proof of effectiveness. An equivalent would be if a drug targeting strep throat didn’t kill streptococcus bacteria but improved unrelated stomach aches or sleeping problems instead. It would be worth remarking on in the interest of further research, but it would hardly count as a positive result…

About antipsychoticsThere are two major groups of drugs classed as antipsychotics (also sometimes called neuroleptics or major tranquilizers). There are ‘first-generation’ medications, such as haloperidol, fluphenazine and chlorpromazine, which first appeared in the 1950s. These are thought to work primarily by blocking dopamine pathways in the brain. They were used mainly to reduce psychotic experiences, such as seeing or hearing things that are not there, in people with schizophrenia. However, they have a very high-risk profile, including the risk of causing permanent movement disorders.

A newer group of ‘second-generation’, or atypical antipsychotics, appeared in the 1990s. They usually have a lower side-effect profile and act on both dopamine and serotonin pathways. This class includes clozapine, olanzapine, quetiapine, and two that have been approved for ‘irritability’ in conjunction with autism in the US: risperidone and aripiprazole. However, as medical journalist Emily Anthes (2014) and many others have noted, they bring

A common response among professionals to behaviours that challenge an autistic child and those around them is to put them on antipsychotic medication. Dr Mitzi Waltz relays her family’s personal experiences of taking this route and warns of the often ill-considered consequences

All drugged up

There was a time, many years ago, when my autistic son was seen as “in need of medication”. His school insisted it was necessary, and his doctor obligingly issued prescriptions for one drug after another. The idea was to curb behaviour that they saw as “tantrums”. And when he began taking risperidone, it worked.

For a while. And at high cost to him.

I still remember the day after his risperidone prescription began. It was a Sunday, and I took him to Mass. He sat through the whole service quietly, something that had never happened before. He came home and took a nap. Usually a whirlwind of activity and mischief, he played quietly in his room for a while and fell asleep early.

School reports from the next couple of weeks proclaimed a miracle. His unwanted behaviour had been curbed, but I soon learned that he was sleeping through much of the school day, and so no closer to participation than before.

And then there was his appearance… as I wrote this article, I had a look at photos of him from that year. His face became red and puffy, his waistline grew and grew, and he became lethargic. As he was still struggling with verbal speech, I was particularly concerned with the impact of the drug on his speech. He became harder to understand and talking seemed to be more effortful for him.

Despite pressure from his school and his doctor, I slowly reduced his prescription and closed the door on that class of medication forever. The problem was eventually solved by finding the right school environment, and by supporting him to develop effective communication skills.

Questionable researchAs I have learned since, if ever there was a body of medical research that deserves closer investigation, it is the use of medication to treat people with autism – and especially the use of antipsychotic medications.

The reasons are many, but core issues include:

The problem was eventually

solved by finding the right school environment, and by supporting him to develop effective communication skills”

take your pick: children with autism are given a variety of drugs, but their use is often based on studies that are ‘unclear’

www.autismeye.com 25Aut ism|eye Issue 21 2016

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If all else has been done, the behaviour problem is very serious, and your doctor thinks an antipsychotic medication may help, NICE states that careful management is required. Everyone should know and agree on exactly which problem is being targeted, and a method for accurately measuring the impact should be agreed on and used. The medication should be administered for just three to four weeks, and then improvements (if any) and

side effects should be looked at. If there is no improvement in the target behaviour, the trial should end after six weeks.

It’s also crucial that a complete physical examination is conducted before the medication begins and at four-week intervals afterwards. This should include height, weight, waist circumference and blood pressure, and baseline and follow-up testing for metabolic side effects via blood tests (Pringsheim et al., 2011).

This is the model that any parent of a child with autism should insist

with them an average weight gain of six pounds in just the first eight weeks of use when taken by children. Along with the weight gain often comes fatigue, sleepiness, cognitive slowing, hormonal changes – including greater insulin resistance, which means a heightened risk of diabetes – and a risk of developing involuntary movements. There is no data about long-term effects on cognition or development.

There is also only speculation available to explain why such medications would have any effect, beyond their impact as a ‘chemical cosh’ that sedates children to the extent that they cannot carry out actions that bother others or harm themselves. Psychosis is not a symptom of autism.

NICE guidanceWhile these medications are widely used – many would say overused – in the US, the UK’s National Institute for Health and Care Excellence (NICE) guidance is actually quite clear: anti-psychotics appear on the ‘do not use’ list for

treatments targeting core autism symptoms. There

is additional guidance regarding their use for children who display severe challenging behaviour, such as habitual self-harm.

First, other non-medical interventions

should be tried, and given time to work. These should

include paying attention to the role of sensory-perceptual problems and confusing environments in causing distress. Reducing environmental stress, reducing social and other demands, and making sure the child has a working method for communication are key first steps.

Psychosocial interventions, such as talk therapies for more able children or aspects of Applied Behaviour Analysis (particularly looking for antecedents and consequences of challenging behaviour and adjusting these) should also be tried at length before medication is considered.

Many drug studies are

unclear in design, reporting a wide range of behaviour changes in small groups of subjects and lumping them together as proof of effectiveness”

Oliver has a diagnosis of high functioning autism,sensory processing disorder and language andcommunication difficulties which impactedhis social interactions and led to highlevels of anxiety in his previous school.

Our educational, residential and therapy staffdeliver an integrated, consistent approach througha 24 hour curriculum which means that Oliver isnow able to take part in group activities inresidential and has improved social interaction. Hisspeech and language skills have improved and hehis better able to access the curriculum.

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The benefits of therapiesspeaks volumes

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is followed. When that happens, the results can be noteworthy. As one mother told me about quetiapine: “It helps [my son] to be on the planet more – he doesn’t self-injure as much, and can access language better.” She added that her son has regular liver tests, but cognitive testing has proven difficult because of his intellectual disability.

However, lack of access to appropriate services, and lack of GP knowledge of how to help children get them, can lead to antipsychotics being used far too quickly, without adequate monitoring, for far too long. Many parents say they are pressured, and that their doctors do not follow guidelines (Arky, 2012).

Barrage of marketingDoctors have the NICE guidance to draw on, but are also subjected to a barrage of marketing from drug firms that contradicts it.

No drug is available that treats core symptoms of autism, so to tap the lucrative autism market drug-makers instead talk about symptoms associated with autism, hard-to-define concepts such as ‘irritability’ or ‘agitation’.

Adults with autism are prescribed antipsychotics even more frequently than children. As one able adult told me: “I was prescribed risperidone during the time when I was awaiting an evaluation for diagnosis.

“I was further offered anti-depressants on top of that, but knew enough to refuse and then I began to wean myself off it despite my GP’s advice at the time. I do not regret that.” He added: “The only reason I agreed to take the

Dr Mitzi Waltz is a

senior researcher

with the organisation

Disability Studies in

Nederland, a former

lecturer in Autism

Studies, and an

expert witness in

autism-related cases

Below: Emily Anthes,

a journalist who has

spoken out about

antipsychotics

www.autismeye.com 27Aut ism|eye Issue 21 2016

Insight

stuff in the first place was that I was feeling pretty desperate at the time, with my life falling apart around me.”

Adults with autism and intellectual difficulties, of course, are often unaware of what medications they are being given,

Living with autism isn’t easy. But fi nding out all about it should be.

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and not so likely to be able to make an informed choice for or against a medication.

Eliminate the causeBehaviour is communication. Rather than drugging a child until the behaviour disappears – quite possibly because his mental processes have slowed to the point that he can no longer react to anything around him – we need to find and eliminate the cause. The older antipsychotics belong on

a permanent ‘no not use’ list for all people with autism; the newer generation should be used only as short-term emergency measures, or when all other non-medication possibilities have been tried. Any side effects must be monitored with care.

Children deserve person-centred supports and adaptations, and their parents and teachers need adequate support and training to prevent and manage challenging behaviour safely and well.

rEfErEncESl anthes, E. (2014): ‘widely used autism drug carries heavy risks for children.’ Scientific american, 8 may. online at: www.scientificamerican.com/article/widely-used-autism-drug-carries-heavy-risks-for-children/l arky, Beth (2012): ‘autism and medication: a new study prompts debate.’ online at: www.childmind.org/en/posts/articles/2012-6-19-study-autism-medication-prompts-debatel nicE (2013): ‘autism in under 19s: support and management.’ London: nicE. online at: www.nice.org.uk/guidance/cg170l posey, d.J. et al. (2008): ‘antipsychotics in the treatment of autism,’ Journal of clinical investigation, 118(1): pp. 6-14.l pringsheim, t. et al. (2011): ‘Evidence-based recommendations for monitoring safety of second-generation antipsychotics in children and youth,’ Journal of the canadian academy of child and adolescent psychiatry, 20(3): pp. 218-233.l troost, p.w. et al. (2005): ‘Long-term effects of risperidone in children with autism spectrum disorders: a placebo discontinuation study,’ american academy of child and adolescent psychiatry, 44(11): pp. 1137-1144.

Therapeutic alternatives to medication focus on anxietyparents have reported that distressing behaviours in their child faded away when adaptions were made at school, reports Lorna Strong. though few in number, some schools have made therapeutic approaches to reducing anxiety a core aspect of the school curriculum. in this way they set out to tackle the behaviour that can lead to children ending up on medication.

LVS oxford and its sister school LVS hassocks are two such places. Sarah Sherwood, director of SEn at the schools, relays how the schools handle the issue. She says: “individuals with a diagnosis on the autism spectrum will often suffer from elevated anxiety levels.

“the most recent figures available from the national autistic Society detail that approximately 40 per cent of individuals with an aSd diagnosis have at least one anxiety disorder at any time, compared with 15 per cent in the general population. these mental health difficulties, when associated with the impairments that individuals with autism experience, result in poor self-esteem, lack of confidence and a lack of wellbeing for our young people.

“having an anxiety disorder often results in a desire to escape from the trigger situation, which in turn leads to an increased fear of the trigger, causing a vicious circle which is difficult to break. many individuals who display these types of behaviours are prescribed medication before any other avenues have been explored.

“however, interventions such as occupational therapy, speech and language therapy, massage therapy and cognitive behaviour approaches can be equally effective without the side effects which can be experienced when taking medication.

“the relationships that are formed with therapists over time, and the therapists’ experience and

knowledge of the individual, can result in the successful implementation of strategies to help overcome the heightened anxieties that some situations can trigger.

“in this way, the individual is supported cognitively and physically to overcome their fears and, as a result, the anxiety gradually reduces. the added benefit to this approach is that the individual does not experience the symptoms which can be associated with medication or the subsequent effect of medication withdrawal.”

Occupational therapy, speech

and language therapy, massage therapy and cognitive behaviour approaches can be equally effective”

Sarah Sherwood: “the individual is supported to overcome their fears”