My family and autism: regression, recovery and relapse. Michael Fitzpatrick Research Autism Conference Holborn: 21 May 2015

Transcription

1 My family and autism: regression, recovery and relapse Michael Fitzpatrick Research Autism Conference Holborn: 21 May 2015

2 Regression normal development to 18 months, loss skills/language; withdrawal/ difficult behaviour; diagnosis at 2 years Parents soon discover that their doctor has no idea what causes autism and no treatment for it. It is not surprising that they are susceptible to those who can offer a ready explanation ( it was those vaccines ) and an immediate intervention (vitamins, diets, dolphins).

3 Recovery early problems: sleeping, eating, toileting; at puberty, self-injury, aggression; school exclusion Residential school: gradual improvement, recovery (return to his old self/ better than ever ) If this transformation had followed the pursuit of some intervention into which we had invested time, money and hope (whether vitamins, diets, dolphins, or a particular therapy) we would have readily become true believers in, and enthusiastic advocates of, such interventions.

4 Relapse transition from school to supported living; early success, gradual deterioration; onset epilepsy, anxiety, obsessions/compulsions, self-injury, challenging behaviour, incidents ; atypical antipsychotics. What triggers incidents? How can we prevent them, deal with them?

5 Research Priorities There has been much discussion regarding the direction of autism research in Britain, which has a record of achievement in genetics, neuroscience and cognitive psychology. Different, and sometimes conflicting, views have emerged from the autism community from individuals with autism, families and carers, professionals and researchers, research agencies and funders. Many favour a shift in emphasis from basic science to research into areas of more practical relevance. Reflecting on the experience of my family, I would like to pose three questions: Diagnosis: Is earlier better? Intervention: What works? Challenging behaviour: How can we keep people safe?

6 Diagnosis: is earlier better? There is a widespread conviction that early diagnosis leads to better prognosis; this is reflected in a general concern to reduce the average age at which autism is diagnosed. The quest for early diagnosis has a commonsensical appeal: prevention is better than cure, early is better than later. Assumptions: Reliable method of diagnosis Effective treatment No adverse consequences

7 Blunt diagnostic tools Behavioural (quest for biomarkers, genetic, imaging) Screening: relatively low sensitivity, relatively high specificity: more missed cases than false positives. Avon Longitudinal Study of Parents And Children: 30% children diagnosed at 2 failed to meet diagnostic criteria at 4 (milder symptoms, younger at diagnosis) More than half children with autistic impairments sufficient to meet diagnostic criteria were not identified. Ginny Russell, Jean Golding, Brahm Norwich, Alan Emond, Tamsin Ford, Colin Steer (2012) Social and behavioural outcomes in children diagnosed with autism spectrum disorders: a longitudinal cohort study, J Child Psychol Psychiatry 2012; 53(7):

8 Adverse consequences Stigma, diagnostic label becomes a self-fulfilling prophecy. Blame and recrimination: parents blame themselves, one another, grandma, GP, paediatrician. Guilt induced hyperactivity: before window of opportunity closes. Potential benefits of delay in diagnosis: Don t just do something stand there!

9 Intervention: what works? There is an assumption that early intensive intervention leads to a better outcome. This has a powerful appeal to families, and to professionals, but is it true?

10 The Lovaas Cure: the cautionary tale of Applied Behaviour Analysis Early claims based on Ivar Lovaas 1987 study and popularised in Catherine Maurice s 1993 account. Advocates claimed that children with autism graduated into mainstream classes at school, became indistinguishable from peers, and even lost their autism diagnosis. Further research (including randomised controlled trials) has shown that, though some children benefit significantly from ABA, others do not. Unfortunately, it remains unclear which children will benefit, or which particular feature of the technique is critical. Further studies of early intensive behavioural intervention have been characterised by lowering horizons and moving goalposts, using more limited outcome measures, focusing on pro-social behaviours rather than core autism features.

11 Sceptical judgements on early intensive intervention Professor Sir Michael Rutter, 2009: There is no convincing evidence that benefits of psychological intervention are contingent on either very early or very intensive intervention. Ginny Russell /Tony Charman: Despite 20 years of autism intervention research, therapies and treatment that are effective for all children have yet to be developed and interpreting the effectiveness of autism interventions is often a question of glass half full - or half empty Ginny Russell, Susan E. Kelly, Tamsin Ford, Colin Steer (2012) Diagnosis as a social determinant: The development of prosocial behaviour before and after an autism spectrum diagnosis, Social Science & Medicine 75 (2012) 1642e1649. Tony Charman (2011) Glass half full or half empty? Testing social communication interventions for young children with autism reflections on Landa, Holman, O Neill, and Stuart (2011) Journal of Child Psychology and Psychiatry 52:1 (2011), pp

12 What worked for us? A good teacher is more helpful than a good doctor (Oxford Handbook of Clinical Specialities, 1997) Rather than any particular mainstream or alternative therapy, what seemed to produce results was the painstaking collaboration of a multidisciplinary team including educational psychologists, speech therapists, occupational therapists, teachers, classroom assistants and care workers. If it takes a village to raise a child, it takes a small town to raise an autistic child. Perhaps, rather than obsessing about early intensive intervention, we could try to tease out elements of this package that may help children throughout their school years.

13 The research we need Overall, there remains a notable lack of empirical evidence to inform practice and policy with regard to what best practice means in real-world classrooms and how joined-up working, as well as effective and appropriate practice, can best be achieved for autism-specific schools and services. Sarah Parsons, Karen Guldberg, Andrea MacLeod, Glenys Jones, Anita Prunty & Tish Balfe, International review of the evidence on best practice in educational provision for children on the autism spectrum, European Journal of Special Needs Education 2011 One example: an excellent study of children in residential schools Elizabeth Pellicano, Vivian Hill, Abigail Croydon, Scot Greathead, Lorcan Kenny and Rhiannon Yates with Wac Arts (2014), My Life At School: understanding the experience of children and young people with special educational needs in residential special schools, Institute of Education/ Office of the Children s Commissioner. Meanwhile, let s stop ratcheting up anxiety about the urgency of early intervention at least until we have better evidence that it really works.

14 The challenge of challenging behaviour Winterbourne View: scandal upon scandal May 2011: BBC Panorama revelations of systematic abuse and neglect of people with learning disabilities and autism at in-patient unit in Bristol. Closed down, 11 convictions, 6 prison sentences. Numerous official inquiries, reports. June 2012: Department of Health set two-year deadline for transfer >3000 patients remaining in Winterbourne View- type institutions into the community. June 2014: More people in such institutions than two years earlier; more inquiries.

15 Community care crisis Nov 2014: Bubb Report: We will only successfully prevent people with learning disabilities and/or autism and challenging behaviour needing to be admitted to inpatient settings, and discharge those currently in hospitals, if we can achieve a major expansion, and major improvement in quality, of community-based support.. Bubb, S. (2014) Winterbourne View Time for Change: Transforming the commissioning of services for people with learning disabilities and/or autism, A Report by the Transforming Care and Commissioning Steering Group.

16 The problem of atypical antipsychotics In the management of challenging behaviour in the community there is an increasing reliance on atypical antipsychotic medication (Risperidone, Aripiprazole). There is little evidence for the efficacy of these drugs for people with autism, though much evidence of their adverse effects. We urgently need more research in this area, not only into the use of medication, but into models of social care that might lead to a reduced reliance on drugs

17 An emerging consensus The emerging consensus among individuals and families affected by autism is that we should shift the focus of research from basic science to the evaluation of behavioural, educational and social interventions. There is inevitably some conflict between adults with autism who oppose the pursuit of normalising interventions and parents who favour measures that improve social skills and reduce problematic behaviours. Liz Pellicano, Adam Dinsmore, Tony Charman (2013) A future made together: shaping autism research in the UK, Centre for Research in Autism and Education (CRAE), Institute of Education.

18 Alleviating disability-valuing difference As a doctor, and recognising the low level of scientific understanding of autism, I would be reluctant to abandon the sort of basic scientific research that has led to progress in other areas of medicine. As a parent, on the experience of the past 20 years, I would like to see less emphasis on early diagnosis and intervention, and more research into what works for older children and adults. As a doctor who is also a parent, I believe that the desire to maximise health and relieve suffering does not devalue either those who are ill or those who are different. Simon Baron-Cohen: We need to find ways of alleviating disability while respecting and valuing difference

19 An unimagined life: Clara Claiborne Park if today I were given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.

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