I am longing for the day that this word doesn’t consume my mind. Maybe other people are also longing for the day that it doesn’t consume my mind. Actually I don’t really share much ‘autism talk’ with many people at all. I dont know why.
I knew such a long time ago that we were going to get a diagnosis. I knew he was different. The discussions and call in meetings started very young when in nursery. Not once on our journey to diagnosis though did I say to any of the various health/medical and education professionals that “I think he might be autistic”, as maybe I was hopeful that I was just being a paranoid first time mum. Or maybe I just knew I didnt have to say anything. However I remember the day breaking down at work to two colleagues when he was probably 2 years old saying “he’s got autism”.
Thing is I hate it and I love it. Some of the great things about him are because of his autism. He can look at things through his eyes sometimes with such a beautiful and brighter perspective than the rest of us. But he also perceives things in a way which he finds things complicated and confusing which is exhausting for him and us every day.
I love the honesty and frankness that comes with autism. Yes, sometimes he sounds rude but he gets to the point. Absolutely no filter. We all need someone in our lives that doesn’t beat around the bush.
Each person with autism is very different to each other, just like we all are. Symptoms vary and change all the time. They have for us. Some have stopped, new ones appeared, some toned down, some increased. This is the difficulty I think for others to understand about autism.
It’s not always lining up things and sorting things. It can be, but it can also be chaos and destructive and very disorderly. It’s not always wanting to be alone, it is not being able to understand social boundaries and cues and being overly friendly with complete utter strangers and not leaving people alone. Or telling the shop assistant half of a memory or reciting tv show lines that’s just popped into his head and expect them to know how to respond to him. It’s not always not wanting to be touched, it’s squeezing the hell out of people and gritting his teeth and jaws because of the sensory need of a forceful embrace.
It is sometimes super sensitivity to the world around him and wanting his hood up before going in somewhere, but sometimes complete undersensitivity with things like no spatial awareness and completely unaware of bumping into things or hurting himself.
It is being so overwhelmed with surroundings and how he feels that he just spirals into quite some level of hyperness and random disjointed speech.
It’s hating getting asked questions, it’s too much to process. It’s not listening or what we might think is him not listening. He probably is but we are saying too much at once for him. It’s repeating his name over and over and asking him to look at us.
It is accepting the long list of appointments, referrals, EHCP meetings, target meetings and school crap.
It’s him driving me mad every day, but making me smile and laugh to the max.
It’s just what it is. Love him so much.
This post was contributed anonymously as part of our guest post series from parents/carers who are members of the Joseph Spectrum Squad, parent/carer group on facebook.
It took a huge amount of courage for this to be written and published and I’m honoured that the contributor chose this group and page to share her first piece.