Published on 12, July, 2020
I have thought hard about this and have decided not to renew this years subscription for the following reasons:
1) Mendip House. The abuse at a NAS care home has been described as on a par with that at Winterbourne View. Despite the CQC giving NAS a fine, I am still deeply uneasy about it. Especially, as I may need to assisted living/care in the future.
It also raises questions whether charities should arranged care services.
2) NAS seems more tilted towards neurotypicals than those with ASC.
For example Your Autism magazine, if indeed it arrives, is aimed at a NT’s. I have not found one useful piece of info or help for those actually on the Spectrum. For their families and carers yes, not for me though.
The helpline has never answered a call I ever made. And I made quite a few. The online service was poor at best.
The Spectrum magazine is meh.
The forum is ok, but I only use it now infrequently.
I have yet to use the social group service, mainly as it is 20 miles away at best. 40 miles round trip.
3) NAS seems to want to promote itself rather than us. Oh look it’s our birthday, let’s sign up a celeb. But what really bought this home was the All party group on autism. I believe arranged by NAS. On their birthday do they want us to give evidence to the committee? No. Just experts. Can we watch? Well there is very little room so book early.
So I am sorry. I won’t renew my membership.
I often wonder if a new group/charity, specifically for those with ASC.
I think that if a group of people with enough expertise and experience would have the will to come together and make something like that happen, it would be very energising for the autistic community. Starting and running a successful charity is such hard work, and to a certain extent I think all charities - even the great, big ones like the NAS - run on something of a wing and a prayer. They need as many people backing them as possible. Which is why, if a charity ran by and for autistic people were to ever be created and become a success, I think the NAS would have missed a big opportunity to modernise and add more diverse voices to their cause. What a shame for the NAS if the very people they are trying to help turn away from them because they don't feel represented.
I think that the Spectrum magazine is fantastic and clearly a lot of hard work, dedication and passion goes into its production, both from the contributors and the editors. It serves a very particular purpose and in that respect it is a complete success. But if autistic voices are not regularly included in the Your Autism magazine, then I think this omission introduces an unintentional and undesirable segregation of perspectives. Autistic perspectives deserve to be heard directly and by as wide an audience as possible. I do also think the NAS are trying to modernise to this effect and shed their outmoded image of a 'helper' charity. (Note the logo change last year, removing the old logo of a carer and a dependent and replacing it with a colourful letter a.)
I do understand that parents and carers are most probably the overwhelming demographic for the Your Autism magazine, and its traditional demographic too. But, if I were publishing the magazine, I would consider this: each and every one of those parents most certainly has dreams and aspirations for their child. They want their child to grow up and become an adult whose talents - not just their disability - are recognised, who is given opportunities, who is given a voice, who is believed in and valued. What better way to show that this future is possible than to give a platform in the magazine to autistic adults?