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Posts Tagged: post diagnosis

by Marion Hersh.

Control is important to many autistic people and we do not want to give it up to professionals and experts.  I, for one, resisted formal diagnosis for this reason for many years until the need for reasonable adjustments became even more pressing.

Currently, diagnosis acts as the gate keeper to support and adjustments.  However, in practice not a lot of support is available post-diagnosis.  This is clearly wrong.  Access to support should be made much simpler and the amount of support available should be increased, in consultation with autistic adults and young people, so it is useful.  In addition, I would suggest that membership of autistic organisations should not be dependent on diagnosis.  It seems unlikely that others are going to want to gatecrash them and mechanisms for preventing this could be developed if it becomes necessary.

However, self-diagnosis requires both information and self-confidence, so it is not an option for everyone.  There is certainly a need for more information about autism to become generally available, but this will still not make self-diagnosis possible for everyone.  This is particularly true in the case of children.  In theory, a diagnosis could lead to additional information about the person and the barriers they are likely to encounter, followed by a personally tailored set of strategies and support measures to overcome them.  In reality this is rare to non-existent.

Although, like everything else, professional diagnosis is not infallible, it can be useful in the case of challenges based on other people’s stereotypes – you’re not autistic, you can’t be autistic – you can read, speak, have a job, partner, house, life, you’re too responsive, you’re not catatonic, not totally incapable (or whatever the particular stereotypes are) how can you be autistic.  Producing a formal diagnosis is much easier than having to explain away all the stereotypes.  In addition, this diagnosis can then be used to support your arguments challenging the stereotypes and showing the diversity of autistics.

The lack of support post-diagnosis is not unique to autism, as my research on the experiences of blind people in different countries found.  Symptomatic of this lack of support was being given a long cane (white stick) and presumably being expected to know how to use it, though this requires many hours of training.  However, the post-diagnosis situation for blind people is changing.  In addition, many countries have organisations of blind people controlled by blind people.  For many of my research participants going to organisations of blind people, hearing blind people there laugh and joke and seeing they had a life was a turning point.

Something similar would be possible for autism.  However, it is going to take time and resources before each town and city, possibly even each village has an autistic controlled and led organisation, which, amongst other things is able to provide information and support to those who have been newly diagnosed.

Post Diagnostic Haze

by Willow Holloway.

I connect a lot with parents who are going through the diagnostic process with their child. Many are very frustrated with the current system and the long waiting lists and even more disappointed with the post diagnostic support. As a parent after you have been through the diagnostic process with all the stress it entails and then finally after many months your child receives the diagnosis of an Autism Spectrum condition you assume that there will be ongoing support. Too often parents are left to deal with the post diagnostic period alone.

There is a sheer mountain of research and an even bigger mountain of mis-information

Many parents obsess over finding answers and changing the system during this stage these emotions in time can begin to fuel fear and anger. Anger at an unaccepting world, at the system that makes little adjustment and at themselves for not having the answers. It’s no wonder that so many parents see Autism as a negative thing. They are left to deal with the emotions of sadness, grief, guilt, self-blame, self-recrimination, and fears and worries about the future alone.

What a difference a compassionate and empathetic response post diagnosis would make. Being given the ability to meet autistic adults who are happy to share their experiences. A friendly face reaching out a hand with the ability to share knowledge gained and make the road ahead seem less scary. This sort of support can insure that a diagnosis becomes a positive rather than a traumatic experience.

Many of the parents I have connected with express the fact that they are fed up with unhelpful advice from people who have no understanding of autism, neurodiversity, sensory issues, or behaviour challenges but who still believe they have the right to tell them the best way to parent their child. They are continually having to fight the system to get the support their child needs. It’s no wonder that the parents of autistic children are overwhelmed with stress, and in turn this just stresses their child. Which just amplifies the chances of “challenging behaviours” developing and eventually stress related health conditions. We can just as easily be overwhelmed by others’ emotions as we can sensory input from light etc.

The initial stages after diagnosis can be extreme for everyone, I know, I have been there on more than one occasion personally and as a parent. My advice post diagnosis is simple forget the research for now. Try and let go of all the unhelpful advice. Take time to process what you have been told that was useful and then move on and work out the best way to go forward for your individual child. Your Beautiful and Unique child.

Many parents I have spoken to have expressed their frustration at being unable to get any help for their child because their child has been refused a referral for a diagnosis or they are stuck on a list somewhere in the system. My advice. Persevere, you know your child.  Treat your child as if they are already diagnosed. You don’t have to have a diagnosis to begin putting in adjustments. Implement coping strategies. Learn about their individual difficulties and take time to understand those difficulties, don’t focus on the behaviours, focus on what is leading to those behaviours.

Most importantly in my opinion take time to listen to autistic adults and ask them questions. We want to make life easier for you and your child.  Ask us about what we needed as kids and what strategies we had to learn.  We want to make things easier for the next generation by sharing what we have learnt.

Our Aims

Autistic UK campaigns in the UK and beyond to advance the interests of all autistic people and those with “related neuro-developmental conditions”.

Our Mission

Autistic UK will work to ensure that the autistic population of the UK is comprised of happy, healthy, fulfilled and empowered individuals.

Our Vision

Autistic UK envisages:- The establishment of Autistic People’s Organisations (APOs) within every local authority area in the UK

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