I've been meaning to write this one for so long that I almost can't write it anymore. I lie awake at night going over and over what I want to say. I think my recent reading of the new book 'Children and teenagers with aspergers:the journey of parenting from birth to teens' has really made me re-focus on my need to do this.
It presents real experiences of a range of families, all who recount the immense struggle of being a parent to a child or young person with a diagnosis of Aspergers Syndrome. Why is it important to read this book?
Well I think it is very easy to fall into the trap of only presenting the best of our children to the world. I am guilty of this because I want people to see his gifts and his strengths, his beauty and his unusual window on the world. I want people to love him enough to help protect him from the harsh cruelties that exist in our society for anyone who presents in a non-neurotypical way. If you don't know what I mean then go back a couple of years in this blog - you'll soon get the picture.
In fact the stories in this book also present a catalogue of failures from the various professional systems that are meant to support our children's wellbeing, health and education. But these stories also recount some of the huge difficulties that present a parent of someone on the autistic spectrum. Of course no one person with a diagnosis of AS will present in the same way as another. What is really evident from the stories are the number of times people deny that there could be anything 'wrong' with these young people other than bad parenting, lack of discipline and the old favourite 'not enough boundaries'. Anyone who has had to engage at any level with any of the support services that are supposed to help us will have had these accusations many times.
Many of us don't have to look further than our own families and friends to experience these accusations. At least three people in our very immediate families do not believe that our son has AS. They find it difficult to see how such a very bright child could not be anything other than manipulative and oppositional.
What is really distressing about this is the absolute denial of our whole life (because having AS in the family does affect your whole life). So these people have no concept of what our daily lives are really like. They only see us when we have made significant planning efforts and taken damage limitation actions to reduce situations that will trigger autistic meltdowns. If they do witness one due to uncontrollable circumstances such as sensory overload, verbal ambiguity or a myriad of other triggers they label it as a tantrum.
I remember my son cowering in the corner of a corridoor surrounded by family members talking really loudly. He was very distressed and covering his head due to sensory overload but couldn't get away because none of the would move. When I tried to explain and asked them to move a close family member said ' oh he's just having another tantrum'. This enraged me. Why can't you bring yourself to believe me/us. I have reached the point now where I feel like saying 'OK - well you take your small and narrow minds elsewhere - we haven't got the energy to deal with you'
I'll go away and focus on the things that really need my energy, such as when my son can't sleep because he thinks about death all the time, or when he is self harming because he hates himself and what he does so much, or when he can't control the meltdowns and becomes abusive or violent. You don't see all this and you don't help...
And that hurts quite alot.
To go back to the reason for this post - it is not easy to say those things about my wonderful son. I do sometimes feel incredibly lonely, tired and helpless. But if I spend my life hiding them then I am denying our lives in a similar way that you do. Well excuse me - but this is our life...
Get used to it or clear off...
A recent BBC documentary also highlights these issues and include a couple of families with children with autism who display violent responses - available to watch for a limited time only 'When a mother's love is not enough'. It looks at how easy it is to lose control and harm the child you love, through exhaustion, sheer loneliness and frustration. It also highlights the ridiculous and failing support system that the state offers to parents of disabled children.
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