April used to be known as Autism Awareness Month. But in 2021, the designation changed to Autism Acceptance Month. Although it’s only a small change to the name, it’s an important one. Awareness is knowing that somebody has autism, while acceptance is when you include a person with autism in your activities and your community.
This really resonates with me, because whilst it is important for people to understand autism and be aware of needs (which is not just limited to autism but many other invisible disabilities), it is really about people just accepting it. For my son, Jayden, it’s accepting that he is who he is. Whether people understand his needs and thinking or not, we just hope that people respect him and accept him.
Below are some things which are significant for myself and my family. They will not resonate with everyone who knows someone on the spectrum – because everyone on the spectrum is different.
Puzzle Piece Symbol for Autism
The puzzle piece signifies the complexity of the autism spectrum. Every piece is different, but all the different pieces have their own place to make a beautiful picture. The puzzle symbol is also an important symbol for our family as it helped us explain autism to Jayden when he was younger.
We have a schedule on our wall in our living room, so Jayden knows what is happening during the week. Whilst Jayden is not rigid to the point of having a meltdown if there is a change in the schedule, he does wake most mornings and ask:
- What day is it?
- What time is it?
- Who will be there?
- What time will we be home?
Being aware of surroundings
If a place is going to be loud, then we need to let Jayden know before we walk into that setting and may need to offer him headphones or cover his ears. If there are sudden noises, we need to be able to explain what they are and let him know if the noise is going to stop or continue.
New experiences can cause anxiety which can result in jumping, flapping, or running to burn the emotions and excitement. There is no use telling Jayden to ‘stop jumping’ or ‘stop flapping’ because these are involuntary movements. Once Jayden is familiar with his surroundings and is calm, the movement will slow and then eventually stop.
Fingers in the mouth
We have noticed this year that when Jayden is anxious, he will put his fingers in his mouth. For example, he has started basketball this year and this is a common occurrence. Again, no matter how many times we tell Jayden to take his hands out of his mouth, it makes no difference. This is an involuntary reaction for him and he’ll continue to do this until he is calm.
Trying new foods
To try a new food, Jayden will not just automatically bite it. He will first smell it and then lick it to see if he likes the new food.
Jayden absolutely LOVES music! Hip-hop is by far his favourite – we could walk into a shop and Jayden will hear a beat and he will start bopping away. Music is also incredibly calming for him.
Tenses: past, present, and future
Tense is difficult for Jayden to understand. He has what we call photographic memory – he sees something once and because he is literal, he reconciles that with that’s how it is supposed to be. So therefore, if something says “I see it” it is then difficult for him to understand the past tense of “I saw it”.
Sitting is difficult
Sitting on a chair is not his preference and where he has the choice he will stand or otherwise he will sit on his knees.
He likes to have something in his hands that he can feel and fidget with. This distracts him when he feels unsure or uncertain.
Don’t ever promise Jayden you will do something and then not follow through – because he will remember!
It is difficult for Jayden to understand abstract concepts. For example, when we he is playing basketball, we can’t say “you have to keep your eye on the ball” because he thinks he literally has to place the ball on his face. Instead, we need to say, “you need to watch the ball”. Or when something is easy, we cannot say “it’s a piece of cake” because Jayden will expect a piece of cake, so we need to say, “it is easy”.
Don’t mistake focus for being inattentive
Sometimes Jayden will be ‘in his own world’ and focused on his task (or his ipad) but that does not mean he is not aware of his surrounds. We can be just behind him talking about something else, and he will correct us or comment, when we thought he was unaware of what we were talking about. He might look engrossed in what he was doing and not looking at us, but he’s very aware.
So, as you can see – everyone is unique. And although it’s important to raise awareness about autism, it is much more important to accept people for who they are.