Published on 12, July, 2020
Today completes an important step for the National Autistic Society. Today with Rule 13 they complete the abdication of responsibility for supporting autistic adults reaching out for help.You may remember in 2021 that the National Autistic Society closed its general helpline. There was a thread about it on this forum. As was pointed out at the time from that point onwards this forum became the only port of call at the National Autistic Society for help for people who did not qualify for one of the remaining helplines.And the remaining helplines pertain to children in school, children leaving school and parents of autistic children. The National Autistic Society has become a defacto children’s charity leaving autistic adults out in the cold.Now not content with refusing to help autistic adults they now seek to reduce autistic adults ability to help each other. I fully admit that a bunch of amateurs on an autistic support forum is a poor substitute for professional help. However the vast majority of those seeking such help now have nowhere to go professional or otherwise.Some of you know that I also brought a lawsuit against an organisation for discrimination. I reached out to the citizens advice bureau and got no useful help. I reached out to the EASS and they said that they couldn’t help me because the other party would not engage with them. I wrote to established academics with a background in discrimination law and autism and they said they couldn’t help me.Yes I rang that autism helpline back when it existed, back when I tried to get some justice and they said we can’t help you. But at least I spoke to someone who admitted that he was supposed to be able to help me. That helping me was what he was there for.With regard to the law when you bring a case for discrimination most of the time legal aid is not available. This is in part because the majority of discrimination cases go through the small claims track which is intended to operate without lawyers.Something similar applies to the health service. It’s very easy for autistic people to get sidelined in the health service particularly if they are bad at articulating their needs and concerns. Again I know this from personal experience.At this point if autistic adults come to this forum or the loved ones of autistic adults come to this forum and say they are having difficulty with the law or discrimination or a medical issue rule 13 interpreted strictly means that we can provide no helpful advice other than pointing to sources of help that in fact do not exist.For quite some time now I have run a website dedicated to helping autistic people defend their rights and oppose discrimination. I chose not to include a forum on that website because I was aware that policing it could involve a substantial amount of work. However this development has persuaded me to change my mind. So I’m announcing that areyoualien.uk now has a forum for autistic people. The focus of this forum like the website is advocating for autistic rights in government policy and the law and opposing discrimination. You are all very much welcome there.
Thank you Peter.
I'm just posting it here for info:
'This update includes a new rule 13 ' Users should not provide medical or legal advice to other users. Giving medical or legal advice can have serious consequences, even if you’re trying to help another member. Please suggest they get advice from a professional.'
I think we need to consider what 'advice' is in this context.
For example, if we say 'I did this, and it worked for me' that's not advice, but just relating experience.
I think most of us who are professionals are well aware of the need to be cautious when using media such as this. I already pay a substantial premium for my professional indemnity insurance!
I have said before that the rule on anonymity means there is no way of checking if users are actually who or what they claim to be. If you knew my name you could check with my regulator. There is some protection, in that designations such as "social worker " and "educational / clinical / counselling psychologist are protected by law. But anybody can call themselves a coach or a counsellor.
What would be helpful NAS Moderator please note, would be if those of us who are professionally qualified and willing to do some pro bono work could let this be known. (But don't overload us!)
On the matter of the helpline, I think this is a retrograde step. As far as children and young people are concerned there are organisations such as IPSEA, Young Minds, Mencap etc. Not to say an autism-specific helpline for CYP is not helpful, but there is a huge problem for adults with issues around employment, housing and other issues where autism-specific knowledge would be helpful. Even a list of neurodivergent-aware solicitors, social workers and other professionals who people can consult would be helpful.
I will look on the website at the governance of NAS and how members can influence these decisions. There must be an AGM or something where members can have a say on policy.
As for NAS there is no general assembly as such and only one of the trustees self identifies as autistic. None of the leadership team have self identified as autistic on the website.
apparently ‘nothing decided about us without us’ doesn’t apply to NAS’s executive structures.
Given the portfolio of providers they manage, I wonder how they balance their interests as service providers with representing service users. We have the potential for a conflict of interest.
Personally I think giving up on advocacy (or at least advocacy for adults) because other areas have taken off is a cop out. But if that's what they want they should consider passing on the role of being the secretariat for the The All Party Parliamentary Group on Autism on to a different autism charity more focused on advocacy.