Joining in with World Autism Day

I nearly never participated in today’s event.  I had been feeling very sceptical about the effectiveness of tweeting #worldautismday and whether raising awareness of autism was enough.  If awareness means just knowing that autism and aspergers exists then I believe that a majority of our population have already heard about it by now, in which case what is the point of flooding twitter with autism awareness tweets?  And anyhow if people aren’t interested are they really going to bother to read what I or anyone else is saying?

As I said, I was feeling very sceptical about the whole thing more so because I felt that autism awareness is not achieving much for my children.  You see, their schools are very aware of autism and aspergers, the local authority and the health services are very aware too as are my family and friends but do any of them truly understand?

The local authority know my children are out of school and they have provided a home tutor for my son but my daughter receives nothing.  She doesn’t qualify because she doesn’t have a medical condition though we are currently waiting for an appointment with a psychiatrist.  Her school have a duty of care but quite simply they do not care and have made no attempt to maintain her education.  Meanwhile I’m waiting to hear whether the authority will conduct a statutory assessment and am feeling pretty confident that we will be rejected because that is what they do as a matter of course.  It has been said, on the local grapevine, that the council likes to put parents off in the hope that they will go away and save the council some money except that I’m not going away.

As for other forms of support, there are few that my children can access.  The local disability group is a fabulous group that provides loads of social and sports opportunities for those children and young people with learning disabilities.  But my children do not have learning disabilities and they cannot access the service even though their ASDs impact on their learning and social and communication skills in significant ways.  Neither can they access the clubs and organisations set up for non-disabled children.  Officers in our council house seem to think that providing awareness training to the people involved in running these groups is enough but it isn’t.  As I experienced with my daughter, her early exploits into the world of swimming, dancing and brownies fell apart because of the lack of support in helping her to cope with the confusing language and behaviour of her peers.

And so, like her brother, she is not included in the community not because of the lack of awareness but because of the lack of resources.  Like her brother she is at home with me and though I love them both very much and do as much with them as possible I can’t provide everything to nurture their talents; computers for my son and art for my daughter.  My skills are in other areas.

My children, like all of our children, need an education system that is properly resourced, a curriculum that is less pressured and more creative and practical and access to clubs that properly support them.   We also need a SEN system that works, where beaurocracy is kept to a minimum and where people work together in the best interests of a child.  Often this is not the case.

Equally important is for all of our children to be taught about disability and difference in school.  Too often I have witnessed a teacher too nervous of discussing my children’s difficulties to the class.  Too often they opt out and the responsibility falls on the shoulders of my child to deal with the burden of difficult questions and taunts from their peers.  Too often I hear about bullying in our schools and on our streets and when your child is affected by such lowly behaviour it hurts, a lot.

My son and daughter need people involved in their care to understand all forms of autism and to understand that autism is as diverse as the non-autistic population.  I cannot repeat it enough, if you have met one autistic person you have only met one and even then can you really say you know them?  My children also need the people that care for them to show respect for their parents and to understand the impact that autism and aspergers has on the family including siblings, grandparents, aunts and uncles.  Everyone is touched by autism in a family but often that is forgotten.  Remember also that these family members can hold huge amounts of knowledge about their loved ones – to ignore them and to undermine them is at your peril and risks a fractious relationship with that family for a long time.

And so the night before world autism day I had every intention not to join in.  I had thought it through and had come to the conclusion that it was a waste of time that is until this morning when I went downstairs to see my daughter wrapped in a blanket, fixated on her computer game and barely communicative.  She didn’t go to school; she couldn’t face it, there is no support.  Then I went upstairs to wake my son up except I didn’t have the heart to wake him up.  He was asleep after being awake most of the night and so I perched on the edge of his bed and looked at his pale but peaceful face.  I thought about his life, how hard it is for him that his dad is working away, how difficult learning is for him, how he can barely cope with leaving the house and how he can hardly look after himself.

For a few seconds I shed a few tears for him and for his sister downstairs.

They deserve better than this I thought to myself and with that I went downstairs switched on my laptop and joined in with everyone else around the world.  It was the only opportunity I had and it only comes round once a year.  I can’t leave the house to join in with a demonstration or tie myself to a public building and decry the government’s lack of resources.  My computer is my only link to the outside world, it is my voice and the only chance I  have to unite with others and to try and get people to listen to our stories.  Even if only one person learnt something today then that is better than nothing.

 

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10 Responses to Joining in with World Autism Day

  1. My hope is that this will encourage people to move beyond just the recognition that ASD exists. I think that it takes parents like yourself to help lead the way in these conversations for other parents whose children are recently being diagnosed. The first thing I do whenever I am presenting a family with this diagnosis is to point them in the direction of other parents and support groups in their area to be able to communicate with other families. Personally, I’m glad that you took the time to post:)

    • Aspie in the family says:

      Thanks for commenting. On reflection it was a good thing to get involved in. Sometimes its so easy to become cynical and think its a pointless activity but if I don’t grasp these opportunities then I can hardly stand there and complain about the ignorance of others. Deb x

  2. Blue Sky says:

    I have some similar reservations about world autism day, but felt that I should do something, so yes I put a piece on my blog’s Facebook page and helped some distraught Mums get a piece in the paper today (my PR background). I hope it helps x

    • Aspie in the family says:

      Hi Blue Sky – I’m of the view that if everybody contributes their bit then together we have more of a chance of getting the change we want. Its never just one person that achieves social change; its a collective endeavour. I’m sure your contribution will have helped. Deb x

  3. Theramblingpages says:

    And now I wished I had joined in too – I feel very much like you did but reading your post (very well written post) it has made me realise how right you are x

    • Aspie in the family says:

      There’s always next year RP but you can still spread awareness any other day of the year, if you want. Thanks for commenting. Deb x

  4. Deb Johnson says:

    I’m glad you participated. It takes many small hammers to break down large walls. Your voice is one small hammer. I’m sorry that you lack the resources in order to let your children participate in activities. That must be very hard. Being an Aspie myself means I don’t mind staying squirreled away in my home with my girls. They manage okay at school, but have been bullied and teased. Frustrating I know. And you feel helpless when the child welfare people come around to say “your child isn’t properly cared for” or so the teachers reported to them. It only serves to remind me that everywhere people are judging me as a mother. When I have 2 girls with special needs and special needs of my own. Both my girls refuse to take showers unless bribed to do so. I have to hold out a special treat for them. It’s frustrating to say the least. My oldest girl likes to pick away at her sleeves, opening up holes in them. Making her look bizarre with a sweater with a big hole in the sleeve. So we ask her to fidget with something else. That works to a point.

    Anyhow, life is not easy I know. I feel your pain and tears and yes I’ve been there. I’m just glad you found your voice. :)

    • Aspie in the family says:

      Hi Deb, I have to admit to liking being holed up in my home at times but I’m very aware of the possible problems of not encouraging my son out. His agoraphobia is never far away and I really don’t want to return to those days of him being so ill he couldn’t step outside the front door. I understand about people judging us as mothers; I’ve often been blamed for my children’s difficultes but I’ve grown used to it and will speak up, if I have to. As for my daughter she also picks at her jumpers and now they’re full of holes and are really tatty. Fortunately she’s given up wearing her school jumpers because of the sensation of them on her body so she looks more presentable and less prone to teasing. We also have similar challenges with personal hygiene; it is a constant job encouraging and reminding my children to wash, shower and clean their teeth. We’re not always successful, particularly with my son who has a greater level of difficulty. Deb x

  5. Steph says:

    Thinking of you Deb. Sending virtual hugs again. x

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