BBC In Depth: the ongoing battle to define autism

The NHS isn’t fit for purpose anymore as clinical specialities in autism and ADHD, as well as in other areas such as maternity, have been cut. If RTC is so unregulated as is reported with assessments varying in standard and cost, maybe it would make more economic sense to train up more NHS specialists in psychiatry, psychology, speech therapy etc. I must be missing something because if it was that simple, no department would have a shortage of specialists. 

I’m wondering if now would be the right time to launch a big campaign for autism diagnostic and support services. Maybe pester Andy Burnham. BBC Newsnight has been featuring different campaigns on an ongoing basis, e.g.  Epstein victims, Military Veterans affected by Nuclear Testing. Some of us have already written to MPs, but in an attempt to exert more pressure, a campaign needs a higher profile with visible accounts on TV and social media by the people affected. An issue is, who can speak for us in such a visible way? 

Phased said:

Seeing that official watchdog report made me realize that the data is on our side. The crisis isn't because too many of us are seeking answers; it’s because the system itself is failing to support us properly. I just wanted to share this perspective because finding that Ombudsman report really helped me counter the anxiety these recent headlines have been causing.

Thank you.

1. Focusing on my legal protections: I've realized how vital it is for me to understand my statutory rights under the Equality Act before a workplace crisis hits. Learning how to use established frameworks—like the Acas neurodivergent workers guidance or the NAS resources on Reasonable adjustments—is the only way I can safely handle difficult workplace conversations.
2. Aggressively managing my own energy: I’ve had to accept that chronic exhaustion is caused by a poor working environment, not a personal failure. I am having to learn to recognise my early warning signs and apply the NAS tools on Autistic fatigue and energy accounting to protect my health, especially when an employer fails to provide enough resources.
3. Leaning on independent peer spaces: I know I cannot navigate these professional pressures in isolation. Finding validation in peer groups and spaces exactly like this forum is what keeps me grounded when external headlines or workplace environments feel confusing.

My concern with this article was that different prices are paid for private assessments via right to choose, but knee and hip replacements privately are an agreed price. This means that there is less money left for support. If only the NHS were able to employ more assessors it would save money.

It’s very interesting reading, my view is how the first point of contact happens needs to change. The GP has total autonomy, how you are treated is based on their personal views of autism or ADHD not medical science.

Maybe regular courses on understanding autism and best practice would help, unfortunately people have their personal views, but these shouldn’t come into the workplace.

An older GP is likely to have less understanding of autism or ADHD, some refuse to even acknowledge it exists.

If I went to a GP and told them I had a severe headache, I would expect an answer of “no you haven’t.”  I have several family members who work in the NHS,  one is very high up in adult safeguarding, their views totally invalidate “ all this so called autism and ADHD”.

i do wonder if some of the private providers are giving value for money, maybe a cap should be introduced on assessments. For them it is purely business, a gap in the market is identified and the expected profit is calculated. These companies seem to appear, diesel emissions, mis-sold finance and so on. Maybe tightening up on qualifications would help give better care. 
The ombudsman’s report is common sense, the whole service is still too much of a postcode lottery.

Also whilst I’m ‘standing on my soap box’, the only having ‘Right to Choose’ in England needs to stop, it should cover the whole of the UK.