Monday, 25 April 2016

Parenting a child with autism or ADHD: what the science says...

I'm talking about parenting again today. Two papers are served up for your reading interest today, providing an important 'science-based' perspective on the general experience of parenting a child who is also diagnosed with an autism spectrum disorder (ASD) or attention-deficit hyperactivity disorder (ADHD).

The first paper by Britt Laugesen and colleagues [1] "aimed to identify and synthesize the best available evidence on parenting experiences of living with a child with attention-deficit hyperactivity disorder, including their experiences of healthcare and other services." Their review (whose protocol can be seen here), based on over 20 research articles, was able to boil down various study findings into 15 categories or themes. Without plagiarising, they were: "an emotional roller coaster between hope and hopelessness; mothers as advocates in a battlefield within the system and family; parental experiences in a crossfire of blame, self-blame, and stigmatization; shuttling between supportive and nonsupportive services and professionals; routines, structures and strategies within everyday life; and despite multiple challenges, it is not all bad."

The second paper by Khim Lynn Ooi and colleagues [2] (open-access) sought to do a similar thing but with autism (ASD) in mind; coming up with four common themes centred on: "1) The Parent, 2) Impact on the Family, 3) Social Impact, and 4) Health and Educational Services." Within each of these domains, various discussion points were identified covering areas as diverse as 'coping with autism and the child' to 'experience with health services'. As per the final item included in the Laugesen paper on parenting a child with ADHD, raising a child with autism was also described as "not all doom and gloom."

Combined, these papers provide some important details about what might be further done to improve child and parent outcomes as and when autism or ADHD (or both) are suspected or diagnosed. I appreciate that it is easy for me to say this (sat here just blogging about research) and change is often a very slow process. As I've hinted in previous posts, change also needs to be accompanied by additional resources and money, which in these austere times is not an easy thing to come by.

But if there is a bottom line I do think it should be a sentence from the Ooi paper: "The provision of timely, adequate, and continuous support to parents is therefore important in empowering parents to adapt to the lifetime diagnosis of autism, which can be addressed by improvements in public awareness, policy making, and health care practices." Science doesn't necessarily agree with the whole 'lifetime diagnosis of autism' as being applicable to every case (see here) but in particular, I'd champion the idea that 'health care practices' could be modified when it comes to autism (and ADHD) insofar as ensuring that a diagnosis does not lead to a 'second-class citizen' healthcare experience. Words like 'oh, it's just part of their autism' should be heard less and less (see here) as other research seems to agree on the need to focus on "physical well-being" [3]. As to the ideas about policy making and improvements in public awareness, well policy changes are good ideas but don't always come with a guarantee in the real world (see 'Autism Act'). As for public awareness, yes, that is also something that should be happening (see 'The A Word') but given the huge amount of diversity present in the autism spectrum, one has to be very careful not to portray too generalised an 'image' of what autism is (and isn't). Snowflakes people, snowflakes.

Music: Kennedy by The Wedding Present.


[1] Laugesen B. et al. Living with a child with attention deficit hyperactivity disorder: a systematic review. Int J Evid Based Healthc. 2016 Apr 7.

[2] Ooi KL. et al. A meta-synthesis on parenting a child with autism.  Neuropsychiatric Disease and Treatment. 2016; 12: 745-762.

[3] Egilson ST. et al. Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports. Autism. 2016. April 5.

---------- Laugesen B, Lauritsen MB, Jørgensen R, Sørensen EE, Rasmussen P, & Grønkjær M (2016). Living with a child with attention deficit hyperactivity disorder: a systematic review. International journal of evidence-based healthcare PMID: 27058250 Khan, T., Ooi, K., Ong, Y., & Jacob, S. (2016). A meta-synthesis on parenting a child with autism Neuropsychiatric Disease and Treatment DOI: 10.2147/NDT.S100634