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Can a person grow out of autism, and is it an outcome we should be striving for?
- Autism can present in very different ways in different people and so it is important to define what is meant by autism and describe differences that can be observed (e.g. presence/absence of learning disability, co-morbid psychiatric diagnoses, atypical or typical language development) at beginning of essay
o This will be important to draw on when describing which people exactly were involved in certain research projects about optimal outcomes
o As definitions of autism change (e.g. removal of Asperger’s Syndrome from DSM-5) diagnostic practises change, important to consider this in long-term follow up studies or considering whether rates of people moving out of autism categories increases over time. Perhaps diagnosis are becoming less stable as more people are diagnosed who in the past would not have received a diagnosis
- How we define ‘growing out of autism’ is critical to answering this question
o Historical perspective might be useful in providing context. Behaviourism has been to the forefront in optimal outcome research and has historically defined optimal outcome as IQ in the normal range and receiving education in mainstream settings
o More recently, Fein et al. and others have defined outcome as no longer passing a threshold for an autism spectrum disorder according to diagnostic instruments
▪ Does this necessarily mean a person is no longer autistic, or could it be a sign that diagnostic instruments become less sensitive later in life or that these instruments are not well placed to disentangle coping strategies from the presence of autism – given that the condition is behaviourally defined?
o While IQ and autism diagnostic instruments are telling an important part of the story they do not show the whole picture, for instance do those who move into the normal range on these measures have a better quality of life than those who don’t?
- Is there a downside to taking a diagnosis away from somebody?
o We can draw on the removal of Asperger’s Syndrome from DSM-5 here as an example. Many people feel very strongly about this, people who identify with a community and feel as though Asperger’s Syndrome rather than autism is a central aspect of their identity believe professionals are not entitled to question whether this category exists or not
o While people may move into the normal range on IQ, language, or autism diagnostic instruments there are some of these people who would still benefit from supports that could be lost if they are no longer considered on the autism spectrum
- People might wish to discuss the difference between the medical and social models of disability for this question. See Kapp et al for a fuller discussion of this https://www.researchgate.net/publication/224869514_Deficit_Difference_or_Both_Autism_and_Neurodiversity
o The neurodiversity movement consider autism to be natural variation that exists within the continuum of abilities in the world
o But autism is diagnosed not only based on certain profile of abilities to be considered purely as a different way of being – people must be experiencing some degree of difficulties in life to receive a diagnosis
- There exists research evidence that interventions can help people achieve so-called optimal outcomes when this is defined in terms of scores within the normal range on certain psychometric instruments. There is much less research about how we, as a society, can help people to be the best autistic people they can be
- Is growing out of autism an outcome we should strive for?
o It all depends on how you describe growing out of autism
o It is critical to consider who should decide if this is something we should strive for. If autistic people don’t agree with each other or with parents of children on the spectrum how should we address this question?
o Will improvements in some domains reduce the strengths found in autism?
o Do autistic people actually want to grow out of their autism or do they feel positive about it?
o Should we be getting bogged down by whether their autism is truly going away or not if we are helping with some of their difficulties?