Parents lived experience of an offspring autism diagnosis

I recently happened upon the paper by Emilia Carlsson and colleagues [1] talking about parental experiences of the diagnostic processes for their children (with autism in mind) and thought it worthy to mention on this blog.

Detailing the results of a qualitative study where "parents were interviewed about their experiences of the neuropsychiatric diagnostic process, i.e. the time before the screening, the time during the neuropsychiatric multidisciplinary evaluation and the time after diagnosis" some potentially valuable snippets of information emerged.

Three themes are reported on based on parental interviews: "seeking knowledge, trusting and challenging experts, and empowered but alone." The authors suggest that some modifications could be made to the current system (based in Sweden where the research took place) including: "developing a checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a parental training programme."

Outside of the continuing focus on how long the whole assessment/diagnosis procedure related to autism can sometimes take (see here) and the idea that parents/caregivers generally know their children better than strangers (see here), I'd like to think the Carlsson recommendations might stretch further than just applicability to Sweden. Indeed, the findings reported by Laura Crane and colleagues [2] on the UK parent experience of offspring autism diagnosis paint an unequally 'unsatisfactory' picture for many families.

Personally I think there are other ways that the diagnostic procedure can be improved allowing for the current state of research on autism assessment/diagnosis and particularly the notion that an in-depth analysis of a child (or adult) trumps pop psychology quizzes (see here). First and foremost is money and resources. We need lots more of both and a move away from the idea that 'more can be done with less'. Autism assessment and diagnosis is currently time- and resource-consuming because it has to be. Not least because autism rarely appears in some sort of diagnostic vacuum (see here) and each person tends to present differently. If you want an accurate picture of someone's strengths and difficulties, you need to put time into assessing them. Second, I think there is a compelling case for the setting up of regional centres of excellence focused specifically on the assessment and diagnosis of autism spectrum disorders (ASDs). I appreciate that here in Blighty there are centres already in place but these need to be rolled out further across the country and where concerns are raised about a child (or adult) appropriate referral to such centres is made in a timely fashion. The idea that in parts of the UK we might have already started national screening for autism (see here) is complementary to that referral model. This model also pools money and resources together. I might add that the increasing moves to incorporate telemedicine and technology into autism assessments should also be accelerated (see here for example).

Insofar as the support and information provided to parents of newly diagnosed children or indeed, adults finding themselves with an autism diagnosis, I'd like to think that there are already some good measures in place to answer the question: where next? Here in the UK, most people will probably be referred to the National Autistic Society (NAS) as a start. They have some very detailed information about many aspects of autism and have been a mainstay for many, many years. That being said, they are not the only provider of information. I've always been under the impression that for many parents at least, seeking out other parent-based groups perhaps on a more local level has also been important to them. Putting any politics aside, it is not beyond current capability that a list of various agencies and groups could be provided to the parents of newly diagnosed children or newly diagnosed adults at those regional centres carrying further information. This could cover many topics including what educational and financial benefits people are entitled to.

Insofar as the idea of 'empowered but alone' mentioned by Carlsson et al there are some suggestions that can be made here. Not least is a strengthening of the idea that local-level support is a key area requiring more investment. As an example of a resource near where I am, we have services such as this. With a little more investment, I'd like to think that such resources could again be rolled out on a more national scale. Combined also with further training and investment in more on-line resources (including that covering social media [3]) and I'd like to think some small changes could make some big differences to families. The idea also of asking families and their children what they need and how it might be best delivered might also be a rather good idea.

And such support shouldn't just stop as and when the assessment/diagnostic procedure is completed...

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[1] Carlsson E. et al. Negotiating knowledge: parents' experience of the neuropsychiatric diagnostic process for children with autism. Int J Lang Commun Disord. 2016 Feb 1.

[2] Crane L. et al. Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism. 2016 Feb;20(2):153-62.

[3] Mohd Roffeei SH. et al. Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). Int J Med Inform. 2015 May;84(5):375-85.

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Carlsson E, Miniscalco C, Kadesjö B, & Laakso K (2016). Negotiating knowledge: parents' experience of the neuropsychiatric diagnostic process for children with autism. International journal of language & communication disorders / Royal College of Speech & Language Therapists PMID: 26833425