Update to guidelines for pharmacological interventions for ASD, in NZ


Image by Slightlynorth via Flickr

In March 2011, there was a supplementary paper released updating the guidelines in New Zealand, for three pharmacological interventions for autism spectrum disorder (ASD). Those three interventions are aripiprazole, citalopram, and melatonin. This updates the 2008 government publication “New Zealand Autism Spectrum Disorder Guideline” (NZ ASD guideline), which includes the section on pharmacological interventions at 4.4 in the book. The book also contains a list of drugs used for ASD in appendix 9. (Both 4.4 and appendix 9 are accessible via the link above.)

The NZ ASD Guideline is a comprehensive book made for the reference of families, individuals, and professionals dealing with ASD. It is a particularly good resource that looks at the entire life of the autistic person. The New Zealand Guidelines Group (NZGG) is tasked with updating recommendations and information in that book. It has recently released three updates that have only just come to my attention: The one I will be discussing in this post about pharmacological interventions (March 2011); one about ABA (May 2010); and one about diagnostic instruments (April 2011). I intend to do summaries of the other two later, but because of particular personal interest, I’m starting by looking at the pharmacological update. This post aims to summarise that paper. It is not a commentary.

The paper begins by pointing out that the primary interventions for autism are educational and behavioural interventions, rather than pharmacological. The pharmacological interventions cannot cure autism, but they can help manage conditions associated with, or comorbid with, autism. It was considered that the recommendations about pharmacological interventions included in the 2008 NZ ASD Guideline, may have been affected by recently published evidence on three medications, so the paper reviews and updates those recommendations where required. The researchers involved with the paper looked at controlled studies and systematic reviews, and graded them on quality, quantity, consistency, applicability, and the clinical impact of the studies.

(1) Atypical antipsychotic aririprazole (also known as “Abilify” and “Abilify Discmelt”).

Antipsychotics target irritability, aggression, self-injurious behaviour and severe tantrums (details of those problems are expanded on at 2.1 in the paper). Side effects of atypical psychotics include: metabolic and endocrine adverse effects, particularly in children; significant weight gain; and sedation. The existing guideline included risperidone as effective for aggressive, irritable and self-injurious behaviour, and as potentially useful for addressing restricted interests and patterns of behaviour.

Aripiprazole has potential for better side effects, for example it doesn’t impact on cardiac function, and has less impact on metabolic parameters; less impact on weight and less significant changes in glucose, lipid metabolism and serum prolatin.

The guideline group looked at eight studies (six systematic reviews and two randomized controlled trials (if you have a look at 2.2 and 2.3 in the paper you can read details of those studies and their respective strengths). The studies showed aripiprazole to be helpful in 6-17 year olds with ASD, for irritability, global improvements, and quality of life. It is a well tolerated mediation.

Their summary is that aripiprazole might be a good option where risperidone has not been affective, or has had bad side effects.

(2) A selective serotonin reuptake inhibitor (SSRI) citalopram (known as Celexa, Arrow Citalopram, Celapram, Citalopram Rex, and Cipramil).

SSRIs can be used to treat obsessive compulsive disorder (OCD). Direct quote: “Repetitive behaviour can be a disruptive and troubling feature of ASD, and may involve stereotypic movements, inflexible routines, repetitive play, and perseverative speech. Interrupting such routines can lead to anxiety, protest, aggression, and self-injury.”

The evidence considered was as follows (again, a direct quote): “The review update identified preliminary open-label trials of the use of citalopram, for people with ASD, two good quality systematic reviews, and a high quality multi-centre, triple blinded study of 149 children and adolescents, potentially the largest randomized medication trial ever conducted in children with ASD.”

The Guideline Group’s summary is that the evidence suggests citalopram is not effective in treating children and young people with ASD, with moderate or greater repetitive behaviour, and is associated with a small increase in mild to moderately severe adverse events, including increased energy, impulsiveness, decreased concentration, hyperactivity, stereotypy, diarrhea, insomnia and dry skin.

Their conclusion was to not currently recommend the use of citalopram when considering the benefits versus harm for children and young people with ASD. And to be careful using it for comorbid conditions (eg OCD and anxiety) due to adverse effects in this population.

(3) Melatonin (a hormone)

Up to 89% of children with ASD have sleep difficulties, particularly dyssomnias (difficulty falling asleep and frequent night-waking). The risk with sedatives is daytime sedation and sleep-related breathing problems, and behavioural problems.

The Guideline Group looked at four systematic reviews and one cross-over trial. They found good and consistent evidence for use for ASD, especially where behavioral strategies were not working. Side effects were minor and infrequent. The Group decided to strengthen their previous recommendation for the use of melatonin.

They noted that there is no consensus on dosage level, and urged caution with long-term use due to a lack of long-term investigations. Behavioural strategies around sleep (“sleep hygiene,” including looking at day-time activities and environmental factors) should be used in tandem with melatonin.

I want to finish this post by pointing out that I have absolutely no medical training. If you would like more information – about the report or the recommendations it contains – you must click-through on the links I have provided, and of course, if you are considering any of these treatments for yourself or your family, talk it through with your medical professional. The purpose of this post was just to help make the updated information accessible and available, particularly to New Zealanders who may not have otherwise known about these changes.

This entry was posted in Medical treatments, Resources for Parents and tagged , , , , , , , , , , , . Bookmark the permalink.

11 Responses to Update to guidelines for pharmacological interventions for ASD, in NZ

    • I thought my post was very clear on this point, but I’ll repeat it: The paper I’m referring to reached the conclusion that citalopram (the SSRI they investigated) is not recommended. The 2008 main guide book also does not recommend general use of SSRIs for autism (recommendation 4.4.1). I provided links to both sources in my post. Your comment makes it sound like you think they were being recommended in one (or either) source..?

  1. Nidreya says:

    Yes you were clear, I was not! The impression for me is building that these SSRI are not good for anyone, regardless of whether autistic or pregnant.

    Personally, I wouldn’t put anything in my own child that hadn’t been tested on other children for several generations.

    New drugs? Some are great, but some of them should have been tested on the chemist’s own children before they were tested on our children 😉

  2. Nidreya says:

    For the record, I know vaccines and immunisation have been tested on kids for generations, and the benefits outweigh the risks by several orders of magnitude. I vaccinate.

    I am referring more to the kinds of drugs that are being developed at a phenomenal rate, with ever sharper targeting of specific receptors, leading to more extreme unknown possible medium to long term side effects.

    • Hi Nidreya,

      Thank you or coming back and clarifying, and for sharing further thoughts about SSRIs – and new medications more generally – too. I do agree with your sentiments and concerns. I don’t know much about precise medications for ASD, but I have been happy so far to follow the advice of my son’s developmental pediatrician, who is particularly cautious about prescribing drugs for young children. I think extreme caution is warranted when you’re dealing with such young and still-developing brains, particularly when those brains are not developing in a predicatble or widely understood way. It’s an interesting area with important issues, I really should do much more research into it, your own thoughts have motivated me further towards that too, so thank you 🙂

  3. Thanks for this post – really interesting and, being UK residents, we wouldn’t have been aware of this study otherwise. We are also looking into drugs, very tentatively, and with no medical training at all. It’s a minefield and I’ve come across a lot of nay-sayers (mainly people with NT kids!) who think that “drugging” kids is akin to physical abuse. To be honest, I’m not really interested in these opinions but I would like to help my son be in less pain than he is now. Simple as that. Will keep reading and researching. Thanks x

    • Nidreya says:

      Hi Kristina,

      What is causing your son’s pain? I take it there is something co-morbid with the autism? It’s a shame that you are in the UK, that means the magic bullet is off-limits.

      A good place to look is the Wrong Planet website. That’s where adults with ASD tend to openly discuss how the various drugs make them feel, which is consideration number one. Also if you search on erowid for keywords autism and aspergers there are a few very informative anecdotal accounts.

      Aside from that, there are very few non-toxic options and half of those are illegal. Autism is sometimes called ‘bad luck syndrome’.

      Be aware that people with ASD can have atypical reactions to familiar substances.

      Look into all the dietary stuff before reaching for the drugs. Make sure there’s enough essential oils, magnesium, B6 etc.

      Part of autism is the endocannabinoid deficiency. The body makes anandamide from essential oils. That’s why people who eat more seafood get less psychosis too! The body also makes more cannababinoid from stimming. If you can’t sort it out with diet and exercise, then the UK is tricky!

  4. Nidreya says:

    Hi A and O and Thank you 🙂

    Yes there are so many questions. If we take another part-genetic, part-environmental disease of unknown cause, notoriously untreatable, and of similar prevalence to ASD, or maybe take a few diseases, we could compare and contrast:

    Are people with ASD, on average, trying as many, more, or less pharmaceutical options than people with comparable diseases?
    Are the doses higher, the same or lower?
    Are the medications used for longer, shorter, the same duration?
    Adverse effects: Do they lead to discontinuation as promptly in autistic cohorts as in matched cohorts?
    How does the placebo effect differ for autistic people compared with others?
    What are the comparative rates of death, liver damage, cardiovascular or similar severe side-effect?
    Is there ever any need to drug a child with anything toxic while they are still little?

    Adults with ASD have to be content with Alcohol, Cigarettes, inappropriate toxic legal medical drugs and a handful of comparatively non-toxic illegal drugs!

    The big question: Are autistic people being used as a testing ground for any old drug? Ideal subjects because of the difficulties they have in making proper complaints. Have the pharma companies got documents suggesting that people with ASD are 70% less successful in making claims for damages? Oops! That’s my imagination there, pardon me. x

    What do you think? Are we being used?


    • Jack says:

      Nid, I’m not sure if you are talking about clinical trials or general prescriptions. But as one who is familiar with trial requirements, I can honestly say that it is almost impossible (no actually is impossible) to run a non-orphan drug clinical trial with children. Even orphan drugs would have a hard time to get ethical approval. Any adult can join a clinical trial center, but they have no idea whether they will be treated with a placebo or not.
      At the end of the day the parent always has a choice about medication, when the child is older I guess it depends on the individual, but they will have to take more of that on themselves. Substance abuse can happen with anyone, I just hope I can teach and guide my son not to go down that path.

      • Nidreya says:

        Hi Jack,

        I’m talking about every possible source of info. It’s the only way we can increase confidence in safety. Leave no stone unturned. What I am most concerned about are the drugs that are used every day. So that would be legal medications, cannabis, cigarettes and in some sad cases, alcohol.

        There has been talk of using Entactogens and various alkaloids as adjuncts to therapy for ASD but as these sessions are limited in number we don’t need to worry so much about toxicity, just whether or not they help the mind.

        As regards occasional abuse of recreational drugs including alcohol, as long is it is less than once a week, it is good for people to get different perspectives on life. In that sense, the more times an autistic person experiences altered perception there is more potential to learn key things about social interaction which simply cannot be learned through normal teaching methods. Less than once a month is ideal, less than once a week is less to worry about.

  5. Nidreya says:

    Oh and check this out: UK SSDP Blog, doctors not taking illegal medication into account. That applies to a lot of autistic teenagers and adults whether we like the sound of that or not!


Share your thoughts:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s