2017; A Fresh Start for me.

(This originally began as a thread of Tweets on Twitter, but I’ve decided to turn it into a blog post. It has been edited slightly in order to make it easier to read, but the link to the original thread is https://twitter.com/ryanhendry94/status/946312392480382977 )

 

2017 has been a rather interesting year for me, for various reasons.

So, I started 2017, having just arrived home from Singapore after spending Christmas with my mum, dad and sister.

And to be honest, on the advocacy side of things, I was ready to pack it all in, truth be told. I was Autism NI’s ambassador, and that point I knew I was being used as a prop, a fundraising tool, someone who was expected to turn up and pose with a big smile and a fundraising bucket. And I absolutely hated it.

Any ideas I proposed were completely disregarded, any objections I raised about various activities were ignored, and it was increasingly clear to me I was being kept on as the “token Autistic”

Then, one day, they proposed a “Wear it Blue” campaign for Autism Awareness. I immediately said no, and raised the many many issues I had with such a campaign, and they said they’ll not do the campaign. Next thing I know, they just went ahead with it anyway. When I asked what happened to them not doing it, the reply was pretty much “it’s a good money-maker”.

I made it crystal clear I’ll be doing nothing to support this campaign and do not endorse it at all. Then, a few days later, the Chairperson of Autism NI decided to publicly call me “a liability” because I suggested we should be looking to get more Autistic people involved. The obvious implication was that he viewed Autistic people as somewhat of an obstacle to be worked around. Quite an astonishing attitude for the chair of an Autism Charity to take.

I asked for an apology, which he made clear he wasn’t going to issue.
This was the final straw for me, and I resigned, and at that point as far as I was concerned that was me done with advocacy work forever.

 

After a few weeks, I was contacted by a certain Kat Humble, asking me if I would be interested about joining Autistic UK. At this point I was still pretty wary because of my Autism NI experience and said I’ll think about it.

Kat sent me through some material and gave me time to consider. I had a look at what she sent me, and I liked it, safe to say. Working specifically with Autistic People across the UK, and being given a position where I would be listened to and included as part of a team of equals? Sign me up!

So, I joined Autistic UK, and I was a bit reluctant at first to get really stuck in, as this was the first time I’d actually been involved in a project of this size. But, for the first time in my advocacy life, my ideas were listened to and considered on their merits.

I was given an equal say in policy, campaigning, and in the general direction of the organisation. In short, I felt like I was part of a team, rather than a necessary token to be tolerated.

I felt like I belonged, basically. And this gave me enormous confidence and drive, which to be honest I’d really lost during my time at Autism NI.

I’d became so disillusioned with the way Autism charities operated, and especially with how they treated the very people they professed to support. As part of Autistic UK, I’ve worked so much more closely with the #ActuallyAutistic community than ever before, and it’s an amazing experience and privilege to do so.

 

As the year drew to a close, an opportunity arose for Autistic UK, which will allow us to take a big step forward, and to really put us in a position to effect real, and meaningful change. This change is a big jump for us all at AUK, and there is challenges associated with it, but we’re all absolutely determined to see it through, and to make a success of it.

I’m extremely proud to be part of the UK’s first entirely Autistic-led Organisation, and the first in Northern Ireland. I was also honoured to be asked by Damian Milton and co to join the National Autistic Taskforce, which is another project I’m really excited for.

 

Although, all this being said, there has been new challenges associated with my new position that I perhaps wasn’t prepared for at the start.

My role as a Communications Officer is to communicate. 

I find communicating with Autistic people really really easy, in fact it’s by far the most enjoyable part of my role.

However, it’s not just Autistic people I have to communicate with. 

I also have to deal with the less than enjoyable aspects of being an Autistic Advocate.

This year, the anti-vax cult has lined up to take almost weekly character assassination attempts at me. For a two month period I was receiving dozens of abusive messages a day from their supporters.

Being called “brain-damaged” “poisoned” “sick” “damaged” “afflicted” over and over again is not exactly an enjoyable experience, I can assure you. I tend to just laugh at these clowns now, which seems to do the trick.

Also, I’ve had my share of “interactions” with the ABA Lobby. Whilst they aren’t on the same level as the Anti-Vax cult when it comes to abusive messages, there has been some unsavoury events. In recent weeks, the ABA group in Northern Ireland, PEAT NI, appear to have named me public enemy number one.

They’ve made complaints about me, sent their supporters after me, tried to silence me, and various other actions. And my response has always been the same. You claim to be an Autism Charity. And I’m willing to work with an Autism Charity. I’ve even offered to write their “understanding Autism” course for them. They told me I don’t understand Autism and that was that.

A few weeks ago, they sent one of their supporters after me, and after claiming I run the @abaukdiscussion Facebook Page (which I don’t)then proceeded to call me a liar, said I’m deliberately trying to stop Autistic people getting support (LOL) and various other things.

 

My central message is this. If you want to find out more about ABA and it’s effects, talk to the people who have experienced it. In short, talk to Autistic People.

Let’s put it this way. If you were buying a car, but wanted to find out what it’s like to own a particular model, would you talk to the dealer, or talk to someone who owns that model?

Just remember that. ABA therapists make money from the use of ABA. They aren’t impartial.

 

Anyway, I’d like to finish on a positive note. I think it’s rather fitting that in 2017, 10 years after I received my Autism Diagnosis (can’t remember the exact date off the top of my head but it was 2007), I finally have found a place I feel I belong, and valued as part of a team. Things have moved on a lot in the decade since I was diagnosed.

There’s still a long way to go, but every journey has to start somewhere. My dream is a world where Autistic People are openly welcomed, supported and accommodated. A world where Autistic people don’t feel like they have to hide who they really are, just to be accepted by society.

We are seeing more Autistic People in society, and that is a good thing. A lot of the stereotypes about Autism are being challenged, and the old misconceptions are being pushed back. Admittedly not as quickly as we’d like, but there is progress.

People will probably think I am a wild optimist, and they are absolutely correct. I like to think the best of people. Perhaps I’m a little naive about the world sometimes, but that’s just who I am. 

And I’m okay with that.

 

Things I’d like to see happen in 2018?

 

The recognition of diversity within the Autistic Community. 

The media portrayal of Autistic people as the nerdy white kid who works with technology and wants a girlfriend is outdated, false and paints a false picture. And I say this as probably the walking stereotype (I’m white, I wear glasses, I work as a software developer).

 

I want to see Autistic women portrayed more.

I want to see Autistic POC portrayed more.

 

 

Another thing I’d really like to see, in Northern Ireland at least, is Autistic people from all ages and backgrounds being given the confidence to stand up and be proud of who they are. I do believe that, in NI at least, we’ve been slower than the rest of the UK to remove the old “stigma” of being Autistic.

It’s still primarily seen as a “male” condition, and discussions also only ever seem to be about Autistic Children. I’m not saying “talk about Autistic Adults instead”. I’m saying “talk about Autistic Adults as well”.

I’d like to give an example of the progress made in a decade, however. 

I was the first person diagnosed as Autistic at Carrickfergus Grammar School. Now, a decade on, there are many Autistic students there, and the school has a great reputation for supporting their Autistic Students.

 

And for the political parties and activist groups that want to support Autistic people. The best way to do that is by talking to Autistic People. Getting us involved in policy writing. Involving us in decision making. Want to find out how you can best support Autistic People? The best way to do that is by talking to Autistic People and asking this question;

“What can we do to help?”

There are Political Parties who have done well on this front. But sadly, there are also political parties who have not, and have actively avoided involving Autistic People for whatever reason. I will not name the individual parties because this post isn’t about political point-scoring (I’ll do that some other time!) but for parties who do want to support Autistic People, I’m more than happy to facilitate discussions between party members and Autistic folk, if needed.

In 2018 I’m hopeful of some projects in the pipeline that will give Autistic People a platform to have their voice heard, and to help Autistic People get a seat at the table when decisions are being made about us. I’m not for one second saying Autistic people should be the only people involved in these discussions. Parents of Autistic Children, Carers of Autistic People, Teachers, Medical Professionals, all have a right to weigh in on these discussions. But I think there’s something that seems to get forgotten a lot.

There are lots of Autistic Parents. There are lots of Autistic Carers. There are lots of Autistic Medical Professionals. And I’m sure there’s a few Autistic Teachers about too. You don’t have to be one or the other. In a lot of cases, you can be both.

 

Another thing I’d like to see for 2018 is an increased recognition that verbal communication is not the yardstick measurement of a person’s ability to communicate.

I know many people who, if we use the verbal yardstick, are not even close to me in their ability to communicate. Yet, the way they can articulate themselves in written communication puts me to shame. The idea that “non-verbal” is equal to “unable to communicate” is an idea that needs to be consigned to the history books.

Another thing I’d like to see consigned to the dustbin of history is functioning labels. Because I am absolutely and utterly sick of them. They serve next to no purpose, apart from being some bizarre attempt at dividing a very large and diverse spectrum into two camps.

I would be stereotyped as “high-functioning”. Purely because “I don’t seem Autistic” or “I’m able to do normal things” 

Basically, functioning labels work by deciding how good a person is at hiding their Autism. I find this picture is the best way to explain why functioning labels need to be binned.

 

A screenshot of an exchange, explaining why Functioning Labels don’t work for Autistic People
A great explanation of why Functioning Labels don’t work

So, that’s my 2017! What started out as a year where I thought I was just going to pack it all in turned out to be the year I find my natural home.