I admit I have had to get professional support to help me as a parent of a child with severe autism.
I didn’t expect to have a child who could not talk, or who would have severe learning difficulties or scream for hours. I was unprepared for the lack of sleeping, the rigidity of routine, the huge struggles to communicate and the life long high level of care he needs.
I also didn’t expect the professional misunderstandings either.
Please don’t judge me but in my endeavour to help my son I assumed that what these highly trained professionals were telling me was correct. Things like:
‘That behaviour needs stopped because it’s controlling.’
‘It’s extreme sensory seeking and you can’t let him do that!’
‘He needs to be taught strict boundaries.’
‘His behaviour is having a negative and destructive impact on his sister so you need to do somethings out that.’
‘It’s because he has severe anxiety and needs to be in control.’
‘You need to learn to accept he has severe autism and this is just how it is.’
Now I am not saying these are all wrong, or don’t apply to my son, but recently I have been thinking about my son differently though I had no idea how controversial my idea would be.
Could my severely autistic son’s behaviours actually be due to him being very empathetic?
My son has no functional speech. While he can say ‘mummy’ if asked to repeat it or asked a simple question he understands like ‘whose car do you want to go in?’, and he can say ‘no’ when asked simple direct questions using vocabulary he is familiar with, he can’t tell me why he does certain things or why he gets so distressed about other things.
For years people have been trying to ‘guess’ based on their knowledge of autism, or learning difficulties or sensory issues. I was told my son was locked in his own world, consumed with his own thoughts, controlled by anxiety and aware only of his own needs.
When I suggested recently I thought he was actually the loveliest, most empathetic, most caring little boy ever I was looked at as if I had lost the plot.
I shared with a mental health nurse who specialises in challenging behaviour, severe anxiety and learning difficulties the story last week of how my son woke up very early and was making a huge amount of noise and mess in the bathroom removing his myriad of bath toys he has to have in the bath, spilling water everywhere and waking everyone up. Of course I could predict that she suggested he had huge unmet sensory needs and I should try and incorporate more water play to his schedule. It was also suggested he had some type of clock in his room to master when he could get up so as not to disturb everyone else, and other ways to curb and mould his behaviour.
Then I suggested something radical:
I think my son was actually showing concern for others, wanting to help and showing love!
The previous evening I had went over the next days routine. It had started with his sister having a bath, something I knew my son struggled with. My non verbal severely autistic son wasn’t trying to sensory seek, or deliberately wake us all up or control everything: he was taking his toys out the bath to HELP because he CARES about his sister and thought about her the moment he woke.
I started to think about some other behaviours. Could those actually be because he cares deeply for others?
He screams if his sister has socks on when wearing pyjamas. Could it be he himself finds socks uncomfortable and doesn’t want his sister to experience that?
He becomes very agitated if I don’t remove mugs of tea or coffee or glasses of juice immediately after meals. Could it be he knows these could spill and he’s trying to protect us all from wet clothes and wet floors?
He has to be first in the house and first out the house every time or he self harms and screams. Could it be he cares about us all so much he is wanting to make sure everything is ok before the rest of us venture in or out?
He spent years becoming so agitated and distressed at open doors, mostly outside house doors that he felt should be closed? Could it be he wanted to protect others from intruders, the weather or noise? All things he himself struggles with so would naturally want others to be protected from.
He has to have a bath at 6pm regardless what else is going on around him. Could it be he is trying to help us all feel reassured and comforted with familiarity against a world of chaos? Could he be bringing predictability back to help us all feel calmer and more secure?
Of course I can’t say for definite if my interpretation of my son’s behaviours is true because he can’t tell me. However looking at things from the viewpoint that he cares and loves us all and wants to help us has been life changing for him and everyone else.
We used to joke in my house that life revolved around my son. His needs had to come first and we all had to learn to be empathetic and adapt to him. But maybe, just maybe we are doing children like my son a huge injustice.
Can you be severely autistic and still have empathy?
Can you be Scottish and still love English tea?
Why of course you can and the sooner we all realise that severe autism does not mean they only think about themselves then the better things will be for everyone.
Assume people care. Assume they are trying to help.
Always try and see the positive even if others tell you not to.