THE NEED FOR MORE AUTISTIC ADVOCATES IN THE AUTISM COMMUNITY

Why we need more autistic advocates?

We need to change people’s perspectives and ideas of what Autistic People really are or how they do things in their everyday life that can really make people angry or misunderstand us as a whole!
(Image: GEEKCLUBBOOKS.COM)

Everyday is a struggle for many of us autistics as well as our fellow peers that are going through something of their everyday mental health problems or just something that they need to try and fight the fight. We are therefore lacking in some parts of the world people who can advocate for others that are in dire need.
It’s a shame really when you look at this as something need to be done yet sometimes there are reasons to why people doesn’t want to help each other nowadays as the world or mostly people are there for themselves and not others.

Just recently I heard about the hype for a movie that is called, “Please Stand By”.
It is about an autistic young woman living in California. I won’t give any spoilers in case you have or haven’t watched it as for myself.
I have heard good things about this movie but it got me thinking about why advocacy is so necessary.
Attitudes toward the autistic woman were very much that she had no capability to live independently and little to add to the world but as the film unfolds it becomes clear that the young woman is highly talented and resourceful. I was impressed to hear about a female that is portraying Autism of what her everyday life is like as an Autistic. Don’t get me wrong.
There need to be more showing of female roles that acts as autistics as there is a long way to go for doing so. As we know that there are many male roles that has been portraying Autism.
Not trying to sound biased or sexist here far from it. Just speaking my thoughts or in this case writing down my thoughts on this topic.
I’m not sure of the disability politics of the filmmaker but I will hope to watch the movie trailer or something and share my thoughts and reactions to the movie. TBA. One person, mentioned that it had Applied Behaviour Analysis which were very hard for them to watch. Yet, there will be varying opinions on this topic alone which I may talk about or write later. When the film finished I said to my move night visitors ‘I need to write a blog post about this.’

 

 

In fact my blog post is a bit broader than the film in itself. I am not a movie reviewer! No, far from it. I am your normal everyday Autistic/Mental health creator sharing her thoughts and experiences based on some important topics that hasn’t been shared before or may have but thought to share my very own insights as well as a little bit of my experiences. Take them or leave them. Yet, this is how I see and feel the world differently to others and am sure that many of my fellow Autistics in the community may agree.
The thing which struck me the most about the film after someone shared with me briefly trying not to giveaway too much about what it is all about from start to finish is that it demonstrated quite well why advocacy is so important.

The film showed this through:

Highlighting that many people view autistic people as incompetent and like perennial children
There are ‘therapies’ for autistic kids which essentially mirror training a dog. This needs to stop. Why does it need to stop? Because we are still humans and that how it depicits about us Autistics that we are almost like nothing to others. That this is demeaning us to who and what we are as Autistics and to some of the Autistics in what we may stand up for into what we believe in.
Autistic people often have so much to offer the world but this is not noticed or understood by many people due to some lack of knowledge and understanding of what autism is and how the people who has Autism really function on a day to day basis. As I shared before, I can’t stress it enough that every autistic you meet will be different.
There is still a view that autistic people have no feelings or empathy.That folks ISN’T ALWAYS TRUE. Many autistics do feel more deeper than others and that they take on a lot more from others too. This viewpoint about us with no empathy towards others also has to stop.

Image: GEEKCLUBBOOKS.COM) – This says it all about us Autistics. Once, you’ve meet an Autistic, you’ll be amazed to what they can share with you. NEVER ASSUME THAT WE HAVE NO OR LACK OF EMPATHY WHATSOEVER.

In terms of the ‘real’ world, I have been advocating and educating others on YouTube since 2013. Things have certainly changed since then boy has it ever and it’s really daunting and disgusting after hearing to what other
fellow autistics go through on the daily and that they don’t get heard. Even if they did try to speak out they get slammed down from either their peers or just the Neurotypicals but there are still things which really need attention.
I myself – and presumably other autistic speakers – used to only be viewed as a token or the ‘colour and light’ when I have now had the courage to speak with the help of the Social Media along with networking with other Autistics but now there is a growing knowledge that autistic people are the experts in autistic experience (I know hey, who would have thought??!). There are autistic-led organisations like Yellow Ladybugs and the I CAN Network doing great work in empowering autistic young people along with maybe a few more that I can’t think of right now but just to name a few.
Autistic viewpoints are often featured in the news media and not only as ‘human interest’. I see these developments as good things.

However, there are many areas where things require significant work. These areas include:

Employment.

We are mournfully underrepresented in employment numbers and in Australia they are almost six times more likely to be unemployed than the general population. Less than 10 per cent of New Zealanders who have been diagnosed with autism are in full-time employment – but a new programme hopes to change that. She estimated there could be about 80,000 New Zealanders on the autism spectrum who were looking for work.

The figures were in line with international research which found about 2 per cent of the population had an autism diagnosis but only about 20 per cent of those people were in full-time employment. Yet, there is hope for us NZ Autistics as there’s something that may assist us. I will discuss and write more to what I said/wrote later but back to this at hand. Reasoning behind this is not usually because we are unskilled or unemployable but due to a range of factors some structural and others related to the attitudes of individual employers and there being a load of unwritten rules at work that we do not understand or notice. This means our skills and talents may be overlooked and employment can be difficult or impossible when in fact this does not need to be the case.

Education.

We have far lower education attainment levels than the general population. Our children often leave school due to bullying or other issues and simply never go back due to alot of reasons as fear of rejection, fear of getting bullied again and so much more. Higher education can also be a fraught place for autistics. While schools seem to be getting a bit better at inclusion there is still a long, long way to go to address these issues.
Some autism organisations have what I term legacy thinking, meaning that they once had a good message but now have outlived their usefulness.
These are often the organisations who have no autistic representatives on their board or who promote ‘awareness’ events which are exclusionary such as ‘light it up blue.’ Which I won’t discuss here the reason as that again can be saved for another video or blog post.
Organisations supporting autistic people really do need to be genuinely inclusive themselves.

Healthcare:

Accessing healthcare is a real utter nightmare for many autistic people and families. Health settings such as hospitals can be terrifying and exclusionary and medical professionals can be ignorant or even arrogant about autism and do more harm than good. I’ve heard so many stories from other autistics in the autistic community to how they are treated when in hospital etc. It is so bad that many of us elect to not access treatment even when we need it. At the very least, training for medical and psychiatric staff needs to include some autism training as part of accreditation and qualifications.

Gender diversity and sexuality:

Gender diversity and sexuality are a significant consideration for many autistic people. However, attitudes around sexuality and gender diversity can be stuck in the dark ages a lot of the time, especially for Disabled people. Some believe that we are all cis gendered and asexual or heterosexual or whatever sexuality that they chose to become. This goes across all the items listed here – in employment, education, healthcare etc. There needs to be much more advocacy and understanding in this space to ensure young people grow up safe and autistic people are seen as who we are in terms of our whole identity, whatever that may be.
Wider society has a lot to learn about autism and autistic experiences. Sensationalist pieces in news media and stereotypical autistic characters on TV do nothing to help. We need more representation of autistic experience and also autistic characters in TV dramas who are not white cis gendered heterosexual middle class men. Attitudes around disability and other differences need to be improved on a societal level too.
That’s adds up to a lot of advocacy needed! Thankfully there are now quite a lot of us working on these things. When I started, there were a handful of us in Australia and in other parts of the world but at this point in time there are so many autistic advocates and activists and also some genuine allies coming from a place of respect and listening, supporting this work in supporting others as well as including others in the group or niche.

Neurotribes author and someone I consider a very awesome human being, Steve Silberman, described the Neurodiversity movement as ‘the civil rights movement of our time’. I like this analogy. I think drawing parallels to civil rights is a useful way of looking at the way forward. I absolutely long for the day that I will not be needed as an advocate along with many other Autistics that has raised their hand up to spend their time helping others because we will have achieved all we need to.
It is important to understand though that nothing is set in stone. This stuff is all up for grabs, making it so important to advocate and be a strong presence fighting ableism and discrimination. We don’t know the future but we can help to shape it.

  • Applied Behaviour Analysis (ABA) is a ‘therapy’ for autism that is discredited by many and
    has been known to result in post-traumatic stress for some of those it was used on. Based in a rewards and punishments model, it seems more concerned about making children look somehow ‘less autistic’ than actually supporting their development.

Behaviour training focuses on making kids stop stimming and often forces eye contact. We definitely do not condone ABA in the Autistic Community whatsoever.
We as autistics should be able to be able to be ourselves and be able to stim etc. After all, we are still people not animals!

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