What I Want You To Know On Autism Awareness Week

So, let me start off by saying I am all for 'awareness' but I do think an awareness week' is counterproductive! People with autism want awareness every day of the year, not just for a special week or a special day. Also, it's not just awareness they want and need, it's understanding! We don't necessarily want you to understand every aspect of it, but just some understanding would be great. So next time you see someone doing something you feel is unusual, shouting loudly, spinning in a circle, having a meltdown in the street or swearing loudly, don't automatically think it's someone 'being naughty or disrespectful'. Don't get me wrong, before having children on the spectrum if I saw someone as big as my Pops having a full-on meltdown in the street I would probably be one of those who looked and thought, wow she's rude! Having children on the spectrum gives you a different perspective, if I see anything now I don't pre-judge. Now, this is where it gets tricky, some parents say when their child is mid meltdown they would love a sympathetic smile, or the offer of help, in our case it's the opposite. Pops can be quite aggressive when melting down so the last thing we want is someone to try and intervene, but to make out life easier just don't stare and make snarky comments, or worst of all as if you can cope because truth be told no we can't cope, it's hard, and we are just on the edge of melting down ourselves, but we cant, cause we are the adults we are supposed to be the ones in control of the situation. 

Mind dump over with..... I thought the most useful thing could do as a parent of children on the spectrum is share some info, so let's go!

How To Support Someone With Autism
  • People on the spectrum take things very literal, so avoid using words, phrases and humour that can be misconstrued. My funniest memory of this is me saying to Dj "wow, it's raining cats and dogs out there" after coming in from the rain, only to find him stood looking out of the window in horror at the sky, waiting for cats and dogs to fall from the sky!!
  • If you're unsure how best to support someone with autism, ask their parent or carer, they are best placed to know what makes them happy and sad.
  • Sensory perception is key, people with autism have so many sensory sensitivities, so the environment is important. They can be sensitive to light, movement, sounds, smells and touch, we have pre-agreed places that they can and can't go to, for instance, we go to the park at 8am or 7pm before anyone gets there or when everyone has left, as being there when there are other children is just too much.
  • Try and stick to the plan, sudden changes aren't greeted very well, explain things every step of the way. People with autism like the reassurance. just a simple trip to the shops with Pops is exhausting. It's a 5-minute walk and she will constantly ask where we are going, what we are getting, who will be there, she needs the reassurance of those answers.
  • Allow them time to process when given instructions or asked questions, don't badger them for a response straight away. It usually takes time for them to digest the question or request before they can act on it.
  • Makes questions and directions clear, avoid being 'wordy', Pops works better on short commands. Her SALT told us if you give her a whole sentence of instructions she is only hearing 2 or 3 keywords and will switch off. For instance, if I want her to get her cup out of the lounge, I will say "Pops cup please" rather than saying " Pops can you go get your cup from the lounge"
  • DO NOT STOP their repetitive behaviours, obviously, if they are dangerous that's different. But repeating things, doing things in certain ways, lining up cars, walking around with 10 felt tips etc are all coping mechanisms, so please don't prevent them from doing them. At the moment Pops goes to school with 28 Stabilo pens in her bag and 2 Instaglam dolls, shes never takes them out at school, I've asked, but she needs to know they are in there and checks several times throughout the day.
This list could go on, but I think these are a few key facts that would help should you need or meet someone on the autism spectrum. Are you a parent or carer for someone on the spectrum? Is there any you would add?

Autism - Facts vs Myths
  • People with autism cannot talk - This is incorrect, some can talk from day one with no problems at all, some will require some form of assistance. L was an early talker but didn't seem to understand spoken language. Pops didn't say her 1st word until was 5 years old! and it was bubbles... She used a combination of picture cards and sentence strips to communicate.
  • People with autism AVOID social contact - False, I have 1 who avoids social contact at all costs and prefers his own company. I then have one who seeks out company and doesn't like to be alone at all.
  • People with autism do not make eye contact - This is also incorrect, again I have one who does avoid eye contact and one who insists you look at them in the eye when you speak to them. Their eye contact is fleeting and on their terms, but they do give it.
  • Autism is the result of bad parenting - Not even going to dignify this myth, with a response! But safe to say it's false! Autism is a developmental disorder!
  • People with autism are like 'rain man' or have a special talent or skill - This is not technically true, there is a small majority of people on the spectrum, around 10% who have a special ability. 
  • People on the spectrum cannot live alone and live independently - This is false, with the correct support and guidance they sure can! I remember when L was little the thought of him doing anything on his own seemed impossible. He is now 17, goes to college, can manage his own money, travel independently and is looking to the future and living alone.
  • There is no 'cure' for autism - There is no documented cure, but with the correct early interventions they can live pretty 'normal' lives. I hate using the word normal, cause what is normal anyway. I think early intervention is the key! I have 2 who had it and 1 who didn't, as they thought he has ADHD, so he missed out on that key intervention, so he now struggles massively.
I think the main thing I want to point out to everyone is Autism is a spectrum, if you have met 1 person on the spectrum you have met just 1 person on the spectrum as they are all so wonderfully different. I have 3 children on the spectrum, 1 who goes to college, independently, 1 who attends a specialist autism school and needs LOTS of support and 1 in the mainstream with an EHCP and accessing about 50% of the mainstream classes. If you think who much of the spectrum we cover as a family, just imagine how big that spectrum actually is!
If you want to share for awareness or support then please do, but don't just save it for 1 day or just 1 month. If you see a blog post, a picture, a comment then like it, share it, do it all the time, as they need support all the time and we love to know someone is listening.
Thanks For Reading
Mandy
xx

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