There are many lists on the internet titled “things I wish you knew about my kid with autism” or similar sounding titles. Some days I become frustrated because ASD is seemingly cute when someone is a child, like when they can relay to you the name of every dinosaur that ever lived or correct you on a factual error. It however apparently becomes annoying and frustrating when an adult with autism does it.
When I walk into a new environment around new people I often think to myself “how soon is too soon to come out as having ASD?” My mind usually hovers around the I am going to appear quirky/ weird/strange to people anyway. I am not trying to excuse any inappropriate behaviour, I want and need your help in teaching me, I like learning.
Over the years I have been on the receiving end of some interesting responses to “coming out” to people as someone with ASD and different behaviours that I may exhibit. I have written a few things down that I have noticed from experience or from what others have communicated to me.
1. Please discard your stereotypes right at the beginning
Autism Spectrum Disorder is just that, a spectrum. Every person on the spectrum is an individual and just like neurotypicals (non- asd folk) we have our own heart beat and own thoughts so please don’t think because your sister’s brother’s cousin’s friend is one way that I am also like that. The most efficient way to learn about people with ASD is to talk about it. If you want to learn we are very willing teachers.
2. Children with ASD become adults with ASD
We may outgrow the stage where our encyclopaedic knowledge is cute but as a whole, we will not outgrow our ASD. There are many therapies, training courses, medications etc. that help us to become functional, functional is good but there is no magic that causes everything to become “normal” when a child turns 18. Many parents often don’t want to believe or think about this because it scares them. We as adults on the spectrum are paving a path and knocking down barriers now so that the adults of tomorrow don’t have to.
3. Person with Autism vs Autistic person
Please do not tell me “you should not put your autism first” for me, on one day I may say person with autism and on others I will say autistic person, aspie etc. Do not condescend us or use politically correct language as a way of superiority. The best way to work out how to address someone is to ask or listen to how they speak.
4. You must have a very mild case
If I had a dollar for every time I was told this or something similar such as “you don’t seem autistic” or “you seem normal” I would be very rich. It is not a compliment to be told that I hide my quirks well enough to be “normal”
Yes, I am very good at masking myself when in public. This takes a lot of energy and effort and the energy to do so is exerted stronger when I first meet someone because I don’t like the thought of scaring and driving people away. I think a lot about how I have communicated and interacted and it has caused many a restless night if I think I have offended someone or given them a negative impression of me.
5. You’re very smart, it surprises me…
Have you been watching too many movies? It is a spectrum, like everyone else some of us are good at maths, some sport and some music. Just because we communicate in different ways then you may be use to does not make us less smart. Just because someone on the spectrum may have limited vocabulary or communicates through an iPad it does not mean they have a cognitive impairment.
I have a funny story to demonstrate the ignorance of some-
I walked into a bank one day and because I was frustrated and knew I would become angry at someone over a situation not of their fault I used my iPad to communicate, I explained I was autistic and what the problem I needed fixing was and at the end of reading it the lady said to me “that’s very good, did someone else write that for you?” I was angry at this assumption but also I didn’t have the heart to tell her I am a published writer.
Presumptions are not a good thing.
6. I talk too loud or too soft- there is no middle ground
The best way to combat this is to verbalise! Use your words ! Tell me if you can’t hear me or if the whole of the town can hear me. Hand signals are always good.
7. If I talk too much, tell me to shut up
I say this all the time to people, I won’t be offended if you want to change the topic. I have learnt that everyone is different. If you want you can always teach me about something you like to do.
8. Please be blunt
If you do not like something I am doing or saying, tell me. I may be offended for a while or hurt (especially if I know I have hurt someone) but if I do not know, I can not rectify. I will often miss cues or facial expressions that tell me this so please be patient.
9. I am happy!
This has become apparent most recently. Just because I am not smiling does not mean I am not happy! I may be in deep thought or listening intently. I may even love something and still not smile outwardly but I am not sad just cause I don’t have a huge cheesy grin.
10. Eye contact
Please don’t force it, it hurts! I am not lying when speaking, being rude or anything else, it hurts and why do I need to stare at someone’s eyes to talk? If you unsure if I am listening or need me to focus on you, tell me, say Nichole I need you to focus.
11. Yes I am 31, no I don’t have a license
The reason I do not have a license is because when I went for my license a few years ago, I went into a full blown anxiety attack before we even left the car park. I was so sure that I would get it as I had done well in my lessons and when questions about the car features were fired at me I just lost it.
Anxiety is real and I learnt then and there that I was not ready. What would happen if I melted while driving? I would never forgive myself if my behaviour or medical episode hurt someone.
I also suck at decision making, more then 2 options or split second decision making is difficult. Oh I also have no depth perception.
I am however very apt at transporting myself around, I will find a way and I hate relying on others so I will only ask for a lift as a last resort or if someone is going the same place as me. These days you can track public transport on apps so you know exactly when to get off. If you are worried, I will message you when I get home.
12. I make friends, just can’t keep them
I relate easier to people younger then me and older then me and I am not sure why that is but it is common for those with ASD. I have grown up with those younger and older then me and maybe that plays a part. I do not mean to freak people out with the fact that I relate to children easier, I do not mean to harm anyone. I am becoming better and better at talking to people my own age and it is a skill I want to establish.
If I become full on, tell me and I will tone it down, just don’t cut me off because then my mind will fill in the gaps.
13. We are not dangerous
I cringe every time there is a shooting because I just wait for the announcement that the perpetrator was autistic, quirky, a loner etc. Not everyone wants to shoot something up. When there is a shooting I go through a curled up crying stage because I struggle to understand how someone reached that point where that is the last resort, option for them. Why are they not getting help before it comes to this?
14. I am human
My name is Nichole, I like circus, theatre, gymnastics, unicorns and anything that is pink and sparkly. What it comes down to is we can be friends, sometimes it may seem one sided or an effort but we can compromise and work and learn.