My Asperger son is back to school after an eight-week break. It’s been a long summer – I’ve spent most of the time trying to get through the day. The thing I found most difficult was managing his all consuming interest in vacuums and cleaning, which spiralled out of control over the holidays.
Cleaning and vacuums dominate his world – this is what he:
- Constantly talks about;
- Repeatedly asks the same questions about;
- Searches for on the computer (adverts, u-tube videos);
- Feels compelled to do (vacuum carpets, mop floors, wash dishes, dust surfaces);
- Gets distressed about/criticises us for if we attempt any cleaning activity in our home (worrying about bacteria, salmonella, food poisoning). The kitchen has become a ‘no-go’ area.
If I manage to get him out of the house, all he wants to do is visit shops to check out vacuums and cleaning gadgets/ products.
I have mixed feelings about his special interests – should I:
Encourage them? He is a sensitive, creative and intelligent child, with an extraordinary capacity to focus. His interests help him relax and, if properly channelled, he could be the creator of the next super vacuum (Why not? He has the determination and potential to achieve this);
- Or, Try to stop/limit them? His interests can get obsessional at times, especially when he is anxious – this can be difficult to manage at home and isolate him from his peers and the wider community.
Last week, I attended a meeting at CAMHS (Child & Adolescent Mental Health Services), the NHS service that supports children and their families. The Psychiatrist told me my son has Obsessive Compulsive Disorder (OCD) and needs treatment, starting with medication. He recommended Sertraline, a class of anti-depressants called selective serotonin reuptake inhibitor (SSRI), used to treat anxiety, depression and OCD. SSRIs target the brain by altering the balance of chemicals in the body called serotonin. It’s claimed that SSRIs can reduce the anxiety around the obsessions, enabling the person to tolerate the frustration of not carrying out their obsessions. When I voiced my concerns about giving my son anti-depressants, the Psychiatrist said, “let’s try it and see how it goes”. I left the meeting feeling uneasy. I had so many unanswered questions in my mind – Does he have OCD? Is it right to give a 12-year old child a mind-altering drug to control his/her thoughts and behaviour? Will it help? What are the side effects?
I decided to find out more about the use of drugs with young people on the spectrum who suffer from anxiety and repetitive behaviour. I was shocked by what I found out:
- UK physicians prescribe drugs to 29% of children/young adults with autism in their care (1);
- There is a lack of reliable evidence about the effectiveness, possible side effects and long term safety of drug treatments such as SSRIs amongst children on the autistic spectrum – most of the evidence is anecdotal or based on poor quality research (2-5);
- SSRIs have side effects (restlessness, sleep disturbances, suicidal thoughts, self-harm) and may be harmful (2-5);
- There are no guarantees when prescribing these drugs, only ‘possibilities’. Finding the right medication often comes down to ‘trial and error’ (if one drug ‘does not work’, practitioners often alter the dosage or try another one).
I came across one parent’s disturbing story about her son’s reaction to a low dose of anti-anxiety medication (6):
“[His] reaction was bad. Bad, bad, bad. He lost more hard won sills. His language use nose-dived. And his repetitive behaviours both increased and went into overdrive, shifting from worrisome to disabling. On Zoloft (Sertraline), [he] couldn’t get through a single previously independent routine without help … [his] restlessness destroyed his ability to concentrate on any task, no matter how small … Watching my son lose skills, lose control because of a decision we’d made on his behalf absolutely wrecked me. I cried, a lot, because there was no way to take quick action – Zoloft is not a drug a person can just quit. It takes at least a week to taper off and another to flush out – or weeks to flush out, in [his] case”.
Critics of medication claim these drugs are prescribed because they are quicker and less costly to administer compared with other interventions, for example:
- Ari Ne’eman believes they are a quick and easy ‘short cut’ for more appropriate treatments: “A sizable percentage of the medications being prescribed are serving as a means of chemical restraint, rather than having a legitimate therapeutic purpose” (7);
- Dr Gleason believes limited access to specialists in the assessment and treatment of autistic children means the only available treatment is pharmacological – although most families wish to avoid drugs, many have had little support or opportunities for other interventions (7).
Psychological interventions that focus on the underlying causes of obsessional behaviour (often anxiety) and stress-reducing strategies have proven to be effective with young people on the spectrum who suffer from OCD. Cognitive Behaviour Therapy is a talking treatment that can help to overcome some of the symptoms, by helping the person learn new ways of thinking and doing things in response to the obsessions.
However, 1-1 therapy is more costly and often difficult to access on the NHS. In one study of parents of children on the autistic spectrum, 44% found it difficult to get a first referral to CAMHS for their child (some had to wait two or three years for a referral) and 80% said there had been times of crisis with their child’s mental health when they needed support but the majority were unable to access that support (8).
In summary: This is a complex area and there are no easy answers. However, there is one thing I’m sure about – I am not prepared to give my son a mind-altering drug just to “see how it goes”. His interests may border on obsessional at times but they serve a vital purpose (they help him relax) – if you try to alter his thoughts and behaviour through medication, who knows what the outcome might be! It’s simply not worth taking the risk.
NB: Some parents have had a positive experience with medication, saying their child’s behaviour improved after taking these drugs, relieving some of their symptoms. Some drugs may be effective with some children so it’s important not to judge or berate parents who go down this route.
REFERENCES (& EXTRACTS)
- Medication nation, L Geggel, Simons Foundation, Autism Research Initiative, 28.06.2013
- SSRIs, Raising Children Network, Updated 01.09.2014. “This medication can have some side effects including hyperactive or impulsive behaviour, concentration problems and sleeping difficulties. There is also a possible link to suicidal thoughts … Research on the effectiveness of treating the core symptoms of ASD shows mixed results. Some studies have shown positive effects from this therapy, but others have found that SSRIs are ineffective for ASD … Emerging evidence suggests SSRIs aren’t effective for children and can cause harm … More high-quality studies are needed”.
- SSRIs, Best Health website, Updated 21.09.2014: “There has not been much good quality research (randomised control trials) on SSRIs for treating autism in children … Many doctors agree these drugs can help children with autism. But there is not enough research to be sure”
- Most meds don’t help autism, studies show. CNN.com Blogs, 04.04.2011: “The review found that drugs do little good … Although many children with ASD’s are currently treated with medical interventions, strikingly little evidence exists to support clear benefit for most medications”
- SSRIs Not Recommended for Autism in Children or Adults Based on Current Evidence, P. Anderson, Medscape Education Clinical Briefs, 08.17.2010. “Clinicians and parents have hoped that SSRIs will help core features of autism as well as associated problems, but there is no strong evidence that they do … The analysis found no evidence that SSRIs are effective in children with autism and may even be harmful … In the 5 studies of children, there was no evidence of benefit … and some known harms”
- When Medicating Kids Goes Very, Very Wrong. Shannon Des Roc’s Blog, 31.10.2011
- Autism and medication: A new study prompts debate, B. Arkley, Child Mind Institute, 19.06.2012 (reference to Ari Ne’eman & Dr Gleason)
- You need to know, The National Autistic Society, 2010.