Labelling & Perceptions

Labelling & Perceptions
Telling someone about your autism or putting a message on clothing items or an accessory to wear or keep on you is not labelling. It is a way of explaining something about yourself (or your child) that is not visually recognisable to others who will need to know in order to understand how to interact/help/teach/work with/know you (your child) better. 

 

 

 

A parent of a child who had a mild hearing problem or sensitivity to light or difficulty sitting still, would tell the teacher because it is something about their child that the teacher needs to know so that adjustments can be made to ensure the child is happy, able to take on learning and cope in the classroom. Given that autism is not visually recognisable and everyone who is on the autism spectrum is different it becomes even more important to tell people.

Some children on the spectrum can talk but are non-verbal, huh? Some are very early talkers with almost no delays in learning. Some love to be hugged others cannot stand to be touched or bumped at all. Some love stickers others hate them. Some can cope with environmental noises others cannot. Some are sensory seekers and others are sensory avoiders. Some will only wear long sleeves every day of the year and some will only wear t-shirts every day of the year. But, they are all on the spectrum, it’s vast and very difficult to determine. 

 

 

One thing those who have autism do all have in common is that they are truly incredible individuals capable of loving, humour and intellect in their own unique way. People on the spectrum have more in common with us as humans than differences and those differences need to be embraced. I feel children and adults on the spectrum should never ever feel ashamed or less than their peers or not good enough, nor should they apologise for their behaviour or mannerisms, or differences, ever.

 

Being the mum of a non-verbal autistic child I have to admit to being secretly in awe of high functioning/Aspergers children and adults. I genuinely feel a bit star struck around them and find it thrilling to hear them talk about themselves and their interests. Seriously, I do, and I reckon they would even get bored of me way before I bored of their statistics on aeroplane seating plans or whatever. Oh, the trillion things I would ask that I know I would get genuine factual answers to. 

 

I met a young man at the Kent County Show who approached my stand with his beautiful girlfriend and told me was autistic and what a difference knowing it had made to his life. The poor guy was thereafter literally trapped by me and a barrage of questions I fired at him for almost 30mins. I could not stop myself, he was so good looking, so humorous, made almost no eye contact but that didn’t matter and he did his best to answer so many burning questions I had that my son Henry cannot give me answers to. I even asked his girlfriend if he ever answered that question “does my bum look big in this?” (the gall of me, honestly) and do you know how she responded? She said that she asks him how she looks when they are going out and he always answers ‘beautiful’ without looking at her. She knows he doesn’t actually look because he would then have to tell the absolute truth about the outfit and she is beautiful to him no matter what she is wearing. How amazing is that?! 

 

 

 

I could not and have not ever tried to imagine Henry without Autism, he simply wouldn’t be Henry and my child. Autism is part of who he is and it makes him the fascinating, adorable, astonishing, exhausting, frustrating, hard-to-parent, gorgeous, ethereally beautiful person that he is. Who is also incredibly loving, humorous and clever I might add. So, to the woman who once said to me at a dinner in a restaurant with a group of friends ...”Have you given yourself time to grieve for the son you will never have?” !!!!!!! My answer to you now is...”NO, there is nothing to grieve...(you horrible bat)”.

 

As usual, I couldn’t come up with any kind of response at the time and trust me there have been many other comments made that I shall never forget but, actually it’s the judgmental looks with no words that hurt me the most. At least I can stew over what people have said and we can throw it around our own family table with friends and come up with some awesome comebacks with each added glass of wine. But those stares and looks that take seconds to deliver and a lifetime to forget are so hurtful, and all it would take is a split second to stop, think, and be kind.

Drum roll...This is what has inspired me to launch Autism Threads and the dream of a stylish and subtle clothing brand that raises awareness and can provide visual cues to help set expectations and correct people’s perceptions. 

I wish I could invite all the people who have given us those looks over years into my home (one at a time obviously haha) to come and experience what it’s like to interact with Henry when he is relaxed and happy at home. All too often it’s only the bad moments that are witnessed when Henry is in public and already having to deal with so much just to get from one end of a shop to another. And I have to agree that if I didn’t know I too would no doubt be casting a judgemental look. People aren’t exactly going to come up and ask if a person is autistic (imagine if they weren’t?!?!?) and the reality is that very few people can tell the difference between a meltdown and a tantrum.

Their most anxious and sometimes most excited behaviours simply do come across as really loud (drowning out the other sounds they cannot cope with); hyper (jumping, rocking, repetitive echolalia); rude (no eye contact, not saying hello); naughty (tantrum vs genuine and deeply intense and scary meltdown) or, weird (loud noises, hand flapping or other types of stimming). We need to start conversations by sharing our stories amongst our families and friends and so the word will spread and others will also learn to understand and accept.

It needs to go one step further in my humble opinion ie on to actual engagement and interaction. It’s all well and good to know people accept autism and accept your child’s behaviours etc but sadly that tends to be where it stops. Thereafter their reaction is naturally one of apprehension and/or disengagement because they are unsure of themselves or assume that the autistic person/child wants to be left alone. My only advice on this is to have the courage to ask them or their parent, they will be thrilled and they will help you, they are not anti-social. On that note please don’t start an attempt to interact by apologising and saying something like I’m sorry, all I know about autism is the Rain Man! Not cool ok.

I think I’ll put a mini guide up on social media pages...


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