What the Autistic want us to know? by Actually Autistic - Lydia Wilkins

What the Autistic want us to know? by Actually Autistic - Lydia Wilkins

Autism Awareness Month 2021 is slowly drawing to a close, once again. More than ever before, this year has focused on accepting Autism - and there have been plenty of discussions around representation in the media, allyship, and the need to actually listen to Autistic individuals.

For those of you who want to listen, and do better by Autistic individuals, there are just a few things about being on the Autistic spectrum that are really important, even crucial, to know.

 Let’s start with the basics

Autism Spectrum Disorder (ASD) - the official medical term - is a life long, Neurological condition that begins at birth. You may see other people using other terms, dependent on preference or diagnostic material, including Autism Spectrum Condition (ASC) and Aspergers Syndrome.

This is characterised by difficulties with things such as socialising, executive functioning (including the sequencing of tasks), being hyper or hypo sensitive to different sensory input, and more. Each and every individual is different when on the spectrum, and their Autistic profile will be different from any other person.

There is no ‘cure’ and the condition cannot be ‘undone’. This is seen, the majority of the time, as being incredibly offensive. Online scams purport to sell cures for Autism, but this is often a dangerous, chemical solution that will do a huge amount of internal damage.

Individuals can choose their own terminology and how to identify - and you should respect this, and never ever correct us.  


Every Autistic Person Is Different

Being Autistic does not mean that you automatically know every single Autistic person, or that you can provide diagnostic services. I am not a Doctor - but have been asked flippantly by others if they are on the spectrum. An additional characteristic - i.e if you are a homosexual, of a certain heritage, speak a certain language - does not mean you will know everyone in the same demographic.

Our Sensory Needs Are Also Different

Generally speaking, Autistic people can be put into two categories; sensory seekers and sensory avoiders. Seeking means the need for extra input, and avoiding is, well, exactly that. However, we can be a combination of both these things. When it comes to food, I am a sensory seeker - and will often add (a lot of) salsa, too. But I am hypersensitive to noise - so, that means I can hear a lot more than most, but have no filter. I am extra sensitive to it. Traveling can be a nightmare - and I will, very often, have headphones on, too.


Just Ask Us!

Ask us, the Autistic person, about our needs. Ask us about our experiences, terminology, rather than just assuming. That is the very definition of allyship, and it will earn you some extra brownie points, too.

Never talk over or for us. Medical professionals, looking at you here - we may not communicate the way that is apparently ‘normal’, but we still communicate, such as with AAC. You need to respect our autonomy, for the love of everything Holy.

I am a verbal Autistic woman, but am still overlooked. As an example: prior to the pandemic, I made my first flight, solo, to the States. I hate travelling, but the Sunflower lanyard means I can now request special assistance to help me. Covid 19 panic had jammed phone lines, and we were told to ask at the desk on the day, as the airport was overwhelmed and beginning to grapple with the incoming fallout.

Approaching the desk, I said (paraphrased): “Hi, my name is Lydia, I’m Autistic. I was told to come here for special assistance.”

The woman turned to my mum, looked her in the eye; “what needs does your daughter have?”

Yep. I was standing right in front of her. My mum has witnessed this several times - and does not take kindly to this. She laughed at the incredulous snub, saying (paraphrased) “I don’t know - why don’t you ask her?” Her body language indicated I was still there, still in the middle of this - and the conversation was redirected back to me.

So. Listen to us. Communication may be different for us, but we have the same autonomy and rights as anyone else.

Vaccine passport worry? We have been doing this since the day we needed support!

A lot has been said in the UK media lately about vaccine passports - and many people have kicked up a fuss, as this is apparently such an infringement on their freedoms.

Autism is an invisible disability; you cannot possibly tell if someone is on the spectrum just because of how they look. A common experience is to be told, while disclosing, is “you can’t be Autistic, you look so normal!” The various benefit systems do not work for us. Medical care does often not work for us. Our invisible disability needs so much justification and documentation just to achieve some level of basic respect.

We have been doing this sort of thing since the day we needed support. So, spare us the faux concern - and actually listen to us if you would like to be our ally.

We have limited schemes for us - and you’re being selfish if you co-opt them for your own gain

There are hardly any schemes that are for the benefit of Autistic individuals.

The Sunflower Lanyard scheme has, anecdotally, been co-opted by anti maskers throughout the lockdown. I have seen people do this - and I know it because they shouted about masks and “Covid is a hoax so I won’t wear a mask - and I have a lanyard to prove it!!” Other people contact me a lot about this, too.

You are being incredibly selfish if you use a scheme for your own needs, if the scheme was designed for a (somewhat marginalised) community.

The act of being an ally has been talked about so much recently - but Autistic people are so very often left out of this equation. Things are not looking great for us right now - such as with low employment, having to fight the DWP at every turn for basic support, inaccessible pandemic restrictions, and so much more. If you are interested in raising awareness about Autism, you need to listen to us first - and to see us than anything but a problem, something broken in need of fixing. As a species, humanity is so much better in all the different colours - and never the dull conformity of grey.

#teamnono stands for Diversity 

Lydia Wilkins is a freelance journalist covering disability and lifestyle. She is also a newsletter writer and blogger over at mademoisellewomen.com.


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