SHINING A LIGHT ON AUTISM

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Hi Aileen, The New Signature building has a blue light tonight. Xox.

I received this message from my dear friend Colette around this time last year, a reference to the global initiative that lights up iconic landmarks blue to support Autism Awareness Day. She was obviously thinking of me and my son but I wish government bodies would think of us too by turning Autism Awareness into Autism Action for families that face many a ‘blue day’ while caring and supporting a loved one with Autism.

With the cutbacks of already limited services it would seem that the government is not aware of the increase in autism from 1:10,000 in 1980 to 1:88 in 2012. A recent study this year had claimed the ratio is as low as 1:50 yet early intervention, family support services, alternative secondary level education, and employment initiatives remain limited or non existent. Are they not aware that autistic children grow up? Seems not because due to me having the ‘1’ I am very aware that the government failed to support early intervention for my son and I am also aware that there is little in place for a generation of children presenting with autism who are growing up fast and who are turning into adults that will live long lives inevitably dependent on the taxpayers for their support and care.

When my son presented with autism in 2000, services were dire. Now—north and south of the border—services are still dire. Recently when I went looking for help with an issue regarding my son I was advised due to cutbacks, lack of funding, and resources I would get little help. As everything turns blue to help raise awareness for Autism, including me, it seems that autism services have not progressed and so I dearly wish Autism Awareness Day would lead to Autism Action Month and every day thereafter…but all is not lost. Last week, in response to my quest for help I received a letter in the post. It was a reading list of twenty or more books that, apparently, might be able to help me!

While I was standing in complete disbelief scanning the two pages of book titles I noticed my book wasn’t on the list. I laughed out loud at this because why would my book be on the list? It only highlights the lack of support for our children and calls for action…action that has never happened. Lack of services saw me move my son from county and country to a school that embraced children with autism and their needs. It’s no secret the school is Scoil Iosagain in Buncrana. It is also no secret that school funding, resources and support has been stripped from Scoil Iosagain and every other school in the country and from families caring for special needs children.

This month the media will report stories on the blue symbol that raises awareness of autism but will fall short of shining a light on the real issues that plague autism communities and families; government cutbacks, inadequate support and resources that fail to support families that are emotionally and financially drained, constantly dealing with difficult and challenging behaviour that affect everyone in the family, including siblings, sleep deprivation and quite often having to contend with lack of awareness in public places.

The Light it Up Blue campaign will possibly help raise awareness in public places but let’s hope it translates into better services for our children and families. In the mean time it feels good to receive messages from friends that translate into ‘I’m thinking of you.” If you know someone caring for a loved one, why not send them a wee message of support during Autism Awareness Month. It will be much appreciated.

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5 thoughts on “SHINING A LIGHT ON AUTISM

  1. kford2007 says:

    Wonderful but sad post. It is so sad to see so many children afflicted with this condition. You are right. Those in power need to do more to help those desperately seeking care. I will pray for you.

    • ailialana says:

      Thank you. It is sad families have to struggle to get services to enable them to be the best they can be for their loved ones. I hope posts like this one raises awareness that will eventually turn into practical support for individuals and families affected by autism.

  2. Loved the post and the initiative being proposed. My heart goes out to you in this matter.

    God bless.

    shakti

  3. Collette says:

    I am always thinking of you Cian and the rest of your beautiful family honey…. catch up needed very soon…xo

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