Autism Post Diagnosis - Are we doing enough?

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Parents report that receiving the ASD diagnosis can feel like dropping a bombshell, dealing with the immediate shock and trying to making sense of it over time.

If you have ever endured a long wait for a medical appointment which may result in a stressful outcome, you know the news and its supporting information can be overwhelming. You are in the medical appointment and it is hard to focus as they tell you so much information which you almost cannot hear, it is as though your ears are ringing.

 According to NICE guidelines, parents whose children have been diagnosed with autism spectrum disorder should get an explanation on the condition and how it is likely to affect the child or young person's function. However there is numerous research which illustrates the current gaps in terms of support parents receive to come to terms with the diagnosis and strategies to cope with changes in circumstances (such as school transitions, puberty and explaining the diagnosis to family and friends). Above all of this, there is a need for this parent’s voice to be heard as an individual with valid thoughts, experiences and questions.

 There is a definite gap between giving a diagnosis and providing comprehensive and holistic support to appreciate the enormity of ASD as a lifelong condition.  At Autism Unravelled we are driven to bridge the gap and find ways of working for the benefit of individuals, families and professionals.

 When parents feel heard and empowered, they are comfortable to put joint strategies into practice. We acknowledge there is lots of work to be done to move forward but until we hold our hands up and admit that we are not doing enough and there is more to offer then things won't change.

 Many local authorities have diagnosis services leaving families with news and signposting to other services is this enough?  Information is good but is it enough to help people really work though their current challenges and how best to apply the knowledge professionals provide.  The NHS remains a hero in terms of providing health care however the current political agenda does not put Autism on the priority list for health services. 

Going back to the original question when is enough ever enough?  Perhaps because life has so many uncertainties we can never really do enough to prepare for every eventuality... But surely there is more that professionals can do?

Here are five areas where we think parents, families and community groups dealing with ASD could benefit from further support: -

1) Delivering a diagnosis: making sense of it all, in the aftermath of an ASD diagnosis, the shock, the relief, the end of the waiting to find out.

2) Bridging the gap post diagnosis: what the label means to you and your family, explaining ASD to family and friends, answering difficult questions.

3) Providing sustained support throughout life changes: school transitions, changes in the family home, new siblings, puberty and the unpredictability of life.

4) Supporting the child, young person or adult to understand what ASD means to them; embracing the diagnosis to value difference and recognise strengths.

5) Working with the child, young person or adult in their environment, to enable the person to access their environment using strategies whether that be schools, home, or the work place.

At Autism Unravelled we don't pretend to have all the answers but we are open to a new dialogue to acknowledge there has to be a better way.

** Have you had to deal with ASD in your family or community? What would you add to the above list?

Rebecca and Louise are passionate about changing the narrative about ASD. Have a story to share? Send an email to  autism.unravelled@gmail.com or send us a tweet at @AUnravelled