I hate NEXT for Autism
Lets be perfectly clear about one thing – I have no trust of any organisation that does not centre or allow fundraising exclusively to be used by and for Autistic people based on their wants. I also cannot trust an organisation that intentionally tried to gaslight Autistic people and abused us about raising issues with their organisations support.
I wish this event had not happened – I wish that Mark Rober had done research – wishing all of this didn’t change it’s inevitability.
I was brought on after the initial requests had been made – at no point were any of the advocates I interacted with happy about the veil of forced secrecy that was thrust upon us – but we were trying to get the most benefit out of otherwise terrible circumstances.
None of us thought we were the voice of the community. All of us wanted to canvass more widely – this was not allowed.
There was no communication between NEXT and myself at any point – and I will not communicate with them personally – I am independent – and I will ethically never communicate with an organisation that has done so much harm.
The best thing NEXT for Autism could do in my opinion after giving Autistic led charities and mutual aid funds ALL the money from the event is to cease to exist.
The things I liked about Color The Spectrum
I could focus on the negative things but I will talk about some of the things that made it in that were excellent:
- An Autistic woman who was late diagnosed was one of the first presentations of Autistic people we saw – she was in a work program that actually looked amazing and person centred and respected autonomy – it wasn’t training social skills.
- A diverse range of Autistic adults were shown advocating for themselves – there was better than expected representation given the constraints of the event from my understanding.
- Mark Rober acknowledged multiple times that Autistic adults have been trying to be heard and have been repeatedly left out of the conversation – (He still needs to make a proper apology in my opinion). I do not personally doubt that Mark and many members of the production team were trying their absolute hardest to correct his error – but the schedule was locked in and this was days out – cancellation was not an option for probably legal reasons – although this is speculation on my part.
- Every single non-prerecorded piece had people involved use “Autistic people”, not people with Autism – as per the requests made by advocates. Mark Rober specifically mentioned why.
- Every single letter that Mark’s son wrote to a donor said thanks for helping “autistic people” like me. Identity first language.
- It’s clear they had to make schedule changes to their previously planned program as some guests who were meant to feature did not appear – I believe this was to allow for the showing of more actually Autistic adults per the request made by advocates.
- There was a live pledge to give a 3rd of this money to Autistic led charities and organisations as per the advocates request.
- A nonspeaking Autistic advocate Trevor Byrd was shown talking about the importance of AAC
- They tried to let people know that they might be Autistic using a video of Samdy Sam’s that talks about lesser known things about Autistic people.
- They put in more videos of actually Autistic people than they told us that they were going to from my understanding.
The rest of it was an absolute nightmare – for one example – the section with Jack Black eating is one of the most uneducated about Autistic sensory sensitivity things that they could have done. I had to mute it because I have misophonia and hyperacusis.
This was the lowest bar to clear
I cried still – it was meaningful in symbolism that someone actually heard.
I lost a major battle with Kickstarter this year so there was some need to see some change as I have been so depressed about the state of everything to do with Autism. I have had failure after failure, after failure, after failure.
Having a tiny glimmer of change is the first step.
I know this was tiny – I know it doesn’t make long term change – but for once our voices were actually heard in some way and not just ignored – now that gap has been opened I am going to be screaming into it.
I’m demanding more in future
I’m sick of being the allistic version of reasonable – while I believed that what I did in this specific circumstance was the lesser of two evils – it was still an evil. One that I will no longer abide.
ABA is torture, even new ABA which has the same principle. Any version of therapy that denies autonomy of Autistic people is unethical and needs to be stopped immediately.
Nearly all Autistic research needs to be thrown out – we need Autistic people to be present and with a wide inclusive net to heighten understanding of what Autism actually is for those from more marginalized groups far more.
Black Autistics and other people of color as well as Indigenous Autistics need support as a priority – this is an absolute bottom line – they need more acceptance, and white Autistic people need to make sure that these groups are represented or ideally they lead organisations if they wish to.
We need Autistic Emergency Funds to help people – not grants for programs – actual material support – so many of us are relying on mutual aid just to live – this is a catastrophic failure of most governments to actually foster and grow our capacity to contribute to society – we have so much to offer if you just help us with the things we need help with – and understand that we all have spikey skill sets.
Autistic voices need to be heard. ESPECIALLY NONSPEAKING AUTISTICS – we need to be accepted and we need proper support for the stuff we actually want help with.
Masking is killing us – there’s multiple studies that show the stressful effects of hiding our Autistic behaviour which causes massive and prolonged negative mental health effects – and suicide rates for those of us deemed “high-functioning” are 3.7x higher than other mental health concerns – 9x higher if a woman or gender minority.
This was an ethical dilemma that had no winning outcome – I undoubtedly got this wrong
I hated this. I am appreciative I was able to speak about growing inclusion, and that I was brought on – but the situation was awful – there was no way to get what we actually needed which was the event stopping.
I would like to thank all the other advocates for helping me share the anxiety strain of this nightmare – things were often heated as you can expect in this environment but there was always a level of respect even when we had disagreements.
I’d like to thank everyone who shouted or abused NEXT for Autism – you have my support completely. If you do not trust me I understand completely – I had to make a compromise that was always going to be awful.
I will continue advocating. I will continue shouting the truth about Autism – just the fact that ‘Autism Awareness Month’ is over doesn’t mean that my advocacy stops. I don’t cease existing as an Autistic person on their time schedule – and I am always fighting for change in New Zealand, in science, basically anywhere I can do so safely.
Thank you for reading this if you did and I hope if I have let you down now – I can show you better things with less compromising in the future.