I have entitled this post ‘The Kids are Alright’ because I am slightly frustrated about people suggesting that by my children being autistic, essentially they are not alright. And the worst part is, I get spoken to as though somehow ‘I’ am the one who thinks this.
“So what are your ‘concerns’?”
“They don’t look autistic.”
“He’ll be fine once he’s at school.”
“What behaviour does he exhibit? Oh, I wouldn’t worry about that!”
“Isn’t that just (x) year olds?”
I had all of this with my eldest…until he got older and his behaviours became more obvious to the outside world. I am now going through this with my youngest. It doesn’t get easier…and by that, I mean dealing with other people, including the ‘professionals’.
People compare the two children all the time…
“Oh, but the eldest is much worse!”
I have shared a few posts recently, explaining what the term ‘spectrum’ actually means because I am extremely fed up with having to explain to people that these two children experience overlaps in behaviour, but they experience autism in two very different ways.
“Isn’t the youngest just copying the older child?”
Aaaaargh. No. As I said, there are overlaps…but these two children couldn’t be more different. One may be more obvious than the other (currently) but that doesn’t make one more autistic than the other. They have their own struggles and difficulties.
As always, there is just TOO much to go into. As an example, my husband filmed my children this evening BOTH having meltdowns at the same time. My youngest screamed, threw things and was EXTREME! My eldest screamed and cried, but mainly ran around the room finding places to hide…under the table, in the gap between the fridge and the wall, under their tiny table and chairs, between the couch and wall…
I actually have a bruise on my head from where my youngest threw my phone at me last Friday, during a meltdown which started because he didn’t want me and his brother to build a Lego dinosaur. It took me to the ground…and I sobbed. My eldest asked if I wanted a hug and kiss to make it better. He is very sensitive and kind, but also very black and white. In his mind, the hug and kiss was all I needed, and everything was better now, despite the fact I was still sobbing and on the ground, clutching my head. My youngest paused, but would not look at me. He continued to shout, scream, kick and throw…just so angry and destructive. For his safety, and ours, I placed him in his bedroom where the meltdown continued, but I could supervise from a safe position.
My eldest kept pushing me earlier because I said he couldn’t play his video game. He was verbally rude and then headbutted me in the back. I got very angry and he immediately said sorry. I know he doesn’t want to hurt me, but it’s like much of the time, he just cannot handle any emotions (despite all the work we do on this) and feels compelled to be rude or physical.
He has vocal and physical tics that would absolutely meet the criteria for Tourette’s. He has so many…and sometimes these can be replaced by new ones. At the moment, everything is poo and wee.
“But that’s normal for all kids isn’t it?”
Yes, all kids go through that phase, and find it funny…but he is relentless. And it gets placed into every part of conversation and every day life so casually. Much of the time, he doesn’t even realise he’s doing it. It is very hard to discipline children who can’t acknowledge, or understand, what they are doing wrong.
Without repeating details I have shared several times before, my eldest is ASD, I believe PDA, and also has very obvious sensory processing issues. We believe he may also have Tourette’s and Dyspraxia.
My youngest is generally a dream child. He can follow instructions, ask questions and interact on a level my eldest never did. His gross motor is pretty good. He has a love for crashing toys, breaking things and making loud noises. He has a lot of compulsions, and has to follow through behaviours that he knows are wrong…he even says sorry in a worried voice immediately after exhibiting the behaviour as I think he genuinely feels bad…or knows he will be told off. Again, it is so tricky disciplining a child who just can’t help themselves. He has sensory difficulties, particularly with regard to noises and touch, or things against his skin. He hates plasters and cream…and if I need to apply anything to his skin, I have to be really sneaky, hold him down or wait for him to be asleep. If he catches me doing something like this, a meltdown is triggered. He cannot be reasoned with, for example to apply cream because it will help his eczema. He has some OCD behaviours as well. Tasks must be completed properly…and if he starts something…it must be finished.
For example, he is obsessed with wipes, and is very obsessive about which ones he uses. If he has a wipe in the room and you give him another, he will go mad until he gets the specific wipe he wants. If this is dirty and removed because it is not okay to use, he will meltdown, or at the very least have a tantrum. He drags out tasks and activities…and sometimes it feels like he is using delay tactics. At bedtime this evening, his wipe was not folded correctly over the side of his bed so he would not settle until this has been resolved. As he got out of the bed to tend to this matter, Daddy continued reading their bedtime story, and my youngest lost it. He comes across as very controlling, but there is a huge need for him to experience things in a certain way and/or routine. If you carry him over a step, he must go back and walk on that step before he can move on with his day. If you put his shoes away, he must take them back to the place he took them off, and put the shoes away himself, arranging them correctly. He requires a lot of preparation and input before completing absolutely anything.
“But your children sleep well. Don’t autistic people normally struggle to sleep?”
“But your children sometimes cope with spontaneity…so how can they be autistic?”
As a teacher, parent of autistic children, and autistic adult, I can tell you with authority that not all autistics struggle with the same things. Also, MY children were born to parents who really got them and put strategies in place from an early age. I am sick of out of date criteria being applied to autism, like it neatly fits into a checklist. My children still stand out for various reasons, but they are able to ‘fit in’ a lot better than they naturally would because of what we have put in. I am told that if you appear to be functioning or responding to strategies, you will not receive a diagnosis of autism on the NHS.
I say, define ‘functioning’ and ‘coping’. I am a woman in my 30s who ‘copes’ with a lot. I’ve studied and held down responsible jobs…but is there any consideration for just how hard life has been and what a struggle it is every day to exist in this world? Is there any consideration for the physical, emotional and mental toll this takes? I can put on a good show…because I’ve spent a lifetime perfecting it! And I am now teaching my children these skills. It won’t, however, change who they are and how they will feel as autistic people.
I still have an issue with the entire process, and general attitudes towards autism. Don’t see it as a burden…harness it. Don’t deny people their precious diagnosis because you are worried about funding. Help people to identify who they really are, putting interventions into place early. In fact, I don’t even fully agree with interventions! Let’s make the world more ‘neurodiverse friendly’. Why does education require students to sit still all day and regurgitate information like little robots? Why are children who struggle to do this viewed as ‘troublesome’ or unable?
We don’t need to waste money trying to cure autism, or work out how it came to be. We need to support people and create an environment where all people can thrive.