Sunday 8 April 2018

Autism Acceptance Month 2018 Day 6: E is for Experience

BSL: experience (specifically: bottom left sign)

E is for Experience

Autistic adults have a wealth of experience of life from an autistic perspective. We come from all walks of life and between us have probably experienced pretty much everything there is to experience.

In this day and age you don’t have to look far for things about autism; just go to your local bookshop and you’ll find at least ten books (my local Waterstones had about 15 when I looked a few weeks ago), there are 168 titles in the Devon Libraries catalogue and there are innumerable entries online when you type “autism” into a search engine. Some of it is good stuff, some of it so-so and some of it downright terrible. I often feel like you need a degree in navigating the limitless stacks of things about autism in order to sift out which is good and which is toxic!

And there are many, many toxic sources out there, which is where people new to the autism world can come unstuck, because they are strangers in our land and don’t know which signposts are right and which will mislead them.

And to those people, and even to those who have been in the world of autism for many years, and to everyone in between, autistic adults are your best resource for navigating autism. Many of us have good access to technology, so you can find us easily, writing blogs and maintaining Facebook/social media pages, writing articles, giving talks, making videos and so on, and we come from every walk of life.

Parent blogs can be OK, as long as they’re respectfully written, with consent given and they don’t violate the child’s right to privacy (including making the child identifiable and delving into intimate details without permission). Alas, these are few and far between (I would like to recommend Diary of a Mom - website and on Facebook - as an example of how you should do things), and are often lost in the sea of Autism Parent™ “tell all”, “the reality of autism”, etc. blogs that almost invariably end up being all about the parent and how terrible autism is for them. I can understand why parents new to autism might be terrified and fearful for the future – but this is not so much that autism is a terrible thing, but rather that the world is not autistic-friendly or -accepting and because the neurotypical-dominated narrative of autism is so much in the tragedy/burden/fearmongering vein. It needn’t be that way!

This is 2018. Autistic adults have access to technology that allows us to connect to the entire world, and we are using that.  We can and do communicate about experiencing the world from an autistic perspective, and these are the best narratives to engage with because we can explain and discuss autism from that worldview, rather than an outside NT perspective attempting to interpret us.

While an individual autistic cannot necessarily be the fountain of all knowledge, we can direct you to others who can help. For example, I cannot accurately answer questions on how male autistics cope with puberty (at some point I may try to put together a collection or resources by those who have that experience), but I can for females, because I have been there, I have been through it, I have experienced it; I cannot tell you what it is like to be a parent (although hopefully in future that will change) but I can tell you what it is like to be an autistic child and I can direct you to people who are parents. I can certainly make suggestions and if I can’t help with something, there are many other resources and people to which I can direct you.

If there is a topic you would like me to address, please just ask! A private message through the AoW Facebook page is probably easiest (unless, of course, we are already friends!) I’m open to all topic requests, including those of a personal, intimate nature (although anything involving specific people, such as sexual matters, would have to have the consent of other parties, such as my husband).

What experiences do I have? In no particular order and probably not comprehensive:

  • Mainstream education 
  • British education system
  • Bullying (being bullied)
  • Female
  • Adult diagnosis
  • Online interaction and safety
  • University life (studying, socialising, living, support services, etc)
  • Multiple disabilities
  • Dealing with the Department for Work and Pensions (ESA, DLA and PIP)
  • Roleplay (tabletop and live-action)
  • Friendships
  • Romantic relationships (including marriage)
  • Employment
  • Personal care matters
  • Communication
  • Self-advocacy
  • Campaigning and activism
  • Sensory issues  
  • Meltdowns
  • Shutdowns
  • Stimming
  • Growing up
  • Executive functioning
  • Self-management
  • Passionate/intense interests (a lot of us aren’t so keen on “special interest” as it sounds very clinical and pathologising)
  • Play
  • Disability accommodation
  • Being an autistic child
  • Being an autistic adult
  • Not knowing I was autistic and discovering that as an adult

 Some of these are topics I have touched on here at AoW in the past, and others are ones I will discuss in the future – my list of future topics is long and growing all the time! Check the tags.

I have found that connecting with fellow autistics has been an excellent way of understanding and accepting myself. We can share experiences, help and support others who are going through things we have already been through and can be fantastic resources.

I encourage you to make autistic adults a priority if you have questions and want information, rather than NTs, however much they may be billed as “experts”. We can tell you how things are in a way that no NT, however informed and qualified, can.

I also ask that you, and that you encourage others, to amplify autistic voices on matters pertaining to autism, rather than allowing NTs to do what is known in the autistic community as “NT-splaining” or “neurosplaining”, where NTs explain and interpret autistics from an NT viewpoint instead of letting autistics speak for ourselves. For example, if many autistics tell you that ABA is abusive, harmful and causes PTSD and long-term mental-health problems, whereas parents insist that it works (when the reality is that the child has learned that they have to comply), listen to the voices of those who have experienced it.

Autistic people should be your priority when seeking information about understanding and experiencing the world from an autistic perspective. We have so much to say if only people let us do so! Ask us and use our experience!

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