I'm reviving my blog for WAAD 2014. What I've got to say about this day and the message I want people to hear is longer than a Facebook post so I'm putting my thoughts here.
Message for the World Autism Awareness Day 2014
Every day is autism awareness day for us. If you are not aware of the existence of autism or what it is and have been living in a cave then check out the What is Autism section on my blog.
So if you want to take up this call to action on WAAD 2014 then here's what can you do for us to really make a difference:
1. Ignore headlines in the press regarding autism or at the very least take them with a generous pinch of salt. It is mainly sensationalism designed to promote and sell papers and rarely discusses autism in a positive way and if it does, it's all about the savants.
2. Realise and understand that autism is a hidden disability. You cannot tell if a person is autistic by appearance alone. Do not judge a person unless you know the whole story (a mantra for life anyway).
3. Educate your children about autism. We have a hard enough time trying to educate our autistic children about their autism without educating yours as well.
4. Autism is not a childhood condition, you do not grow out of it. Look to educate yourself about autistic adults and try to find out how your business, university, your social groups can engage and include people on the spectrum.
5. Do not Light it up Blue for us.
Over the last decade or so, headlines from the world's press has often induced a major eye rolling fit in this household when reporting about autism. The reports are either raising an alarm of sorts over a new cause or reason for individuals being autistic or it's a heartwarming tale of person X who cannot tie his shoelaces but can play Rachmaninov at age 8. While it is always fantastic to hear of stories where an individual has learned to overcome difficulties, but this is usually after lots of hard work from them, their parents and their support team. to develop strategies to cope with their difficulty. This special talent always has a price. The latest pseudo-scientific report to come out is the claim that children may 'grow out of' autism. Thanks BBC. Of course, this is nonsense and advances in educators and specialists knowledge means that children can, to varying degrees learn to cope with the world around them. That is not to say that the difficulty they face has disappeared but that they have learnt to use certain tools and methods, and have developed strategies to help cope with the problems this difficulty will cause. Autism can create a wide range of barriers in everyday life and these can impact upon an individual to varying degrees. Whilst some people are able to live relatively independent lives, others will require more intensive support throughout their lifetime.
What does autism look like?
Where we are is that our son is going to be sitting his high school exams next year. His peers are being quizzed about their futures and career prospects while they are drilled at school about how it's a priority to choose the right subjects to set the right pathway for their future. Most of us with actual real life experience know this is not always true but as parents we are being given the same information as his peer group and so trying to plan accordingly. While trying to plan for his future I find it hard to get past reports and statistics published on future pathways for autistic adolescents is. The future often looks bleak for children on the spectrum and those similar to my son who are not just socially impaired but also have accompanying learning and physical disabilities.
Autism Speaks, the brains behind colouring autism blue is an awful charity. An organisation that promotes fear, hatred, anti-vaccine propaganda and in the past have claimed to offer a 'cure'. The majority of people do not know that there is such controversy with Autism Speaks because most people assume that any organisation dealing with autism must be doing good things. Bob and Suzanne Wright are very wealthy people with many connections, which is certainly one of the reasons that Autism Speaks has grown to be so influential and powerful in the States and why now their influence is so far reaching. Most people who support Autism Speaks are unaware of how offensive and demeaning their practices and language are to actual Autistic people until recently where a whole stream of autistic adults and adolescents have voiced their outrage against the organisation. I cannot and never will be able to condone the support of any campaign launched by Autism Speaks.
One example of the Autism Speaks message is this video: http://youtu.be/O0vCz2KWMM0
Autism Speaks funded this video to raise awareness of the horror of living with autism and to raise money for their organisation. Naturally, this incenses the entire autism community. In the video which features a mother talking about her desire to kill herself and her autistic daughter in front of her daughter.
Again, The Autistic Hoya addresses the problems with this: 'The interviews in Autism Every Day address—both directly and accidentally—very real and pressing institutional issues like the segregation of "special needs" children within schools, the lack of affordable and accessible support, a general lack of understanding and compassion within communities, and the pervasive construction of an "ideal" mother-child relationship as "joyful" and "easy." The video also neatly encapsulates everything that is damaging about Autism Speaks' rhetoric and agenda. Rather than addressing the aforementioned institutional problems, the organization centers the individual experiences of parents and care-givers, and silences autists by constructing us as pitiable and burdensome. It constructs autism as a tragic scourge that warrants panic and despair, and dedicates its efforts to eradicating autistic people via prevention or a "cure."' So why would I want anyone to light anything up blue in my son's honour? I wouldn't.
Anyway, thanks for reading this.