Hello. It’s been a while. 12 months to be exact.
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.
“World Autism Awareness Day is about more than generating understanding; it is a call to action. I urge all concerned to take part in fostering progress by supporting education programmes, employment opportunities and other measures that help realize our shared vision of a more inclusive world.”
Secretary-General Ban Ki-moon
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?
I’m always being told “but he looks so normal!”. The ways in which autism manifests itself can vary from person to person but it’s never glaringly obvious from a person’s physical appearance. One person with autism may be very verbal, bright and engaged, while another may be non-verbal, and entirely introverted. People with autism tend to have a wide range of skill sets including different strengths and difficulties in the same way that a neurotypical person has, however autism is characterised by a triad of impairments and people typically find challenges with: social interaction, social imagination and communication. People with autism also tend to share common traits such as sensory sensitivity, repetitive and stereotyped behaviours and special interests. Autism can also be associated with physical difficulties and it is recognised that there can be a vulnerability to mental health and wellbeing. Some people with autism may also have learning difficulties like dyslexia and other conditions like dyspraxia or epilepsy, some don’t.
As autism is a lifelong condition, impact will be likely to change throughout the person’s lifetime, and usually in relation to the support they are accessing. It is important to remember that the autism spectrum is not a linear condition with ‘high functioning’ and ‘low functioning’ ends, but rather a condition in which there are also impacts from the environment and sometimes from the stresses of daily life that affects their functioning.
A recent article in the Huffington Post reminded me about the experience we had when we first told A about his autism. I learned from our experience that it isn’t a big talk that’s needed but a constant stream of information. When you go through something like this with a person who processes information differently to you, it’s hard to control the outcome. It’s a difficult subject to grasp and sometimes he sees it in a positive light but mostly in the negative. He is 14, in mainstream school and doesn’t want others to see him as different. I long for the day where he is no longer embarrassed and is proud of who he is and we’ll work towards that. It’s hard watching all of this going on and to see him struggle. Luckily, a new generation of self-advocates and autistic adolescents are finding their voices online and hopefully he will come to find them empowering such as this wonderful piece written by an autistic teenager on articulating a meltdown.
At the moment he’s so influenced by his peers that when they call him a weirdo, a freak, retard and autistic boy, he internalises how this makes him feel and carries it around with him. He feels ashamed because his peers do not understand why he does some of the things he does. He cannot articulate his autism well enough to make them understand. That’s a big responsibility for a 14 year old, one that society puts on his shoulders because we are too polite or embarrassed to do. So I implore you to ask questions of the parents and even ask the child, they may surprise you. Don’t try to empathise, it’s patronising. Often I am told “We’re all on the spectrum somewhere” which I find really frustrating. This comment implies that everyone has these kinds of difficulties, and that my son just needs to get his act together. That, it’s a case of won’t, not can’t and that’s a horrible supposition.
What will the future hold?
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.
Currently, between 76 and 90 percent of adults with autism are unemployed*. Adults with autism need access to post-school education, training and employment initiatives to enable them to join the workforce. Education and employment can also enable them to overcome the social exclusion they often face, taking more active roles in their communities, rather than being dependent on family and social support. 1 in 100 people are estimated to have Autism Spectrum Condition, which means there are over 600,000 people in the UK with the condition; only 12% have full-time jobs as opposed to 49% of people with general disabilities. A report from the London School of Economics recently stated that autism costs UK society £27bn annually with a large amount of that cost being derived from lack of employment.
I know it’s a few years off yet but I need to be prepared. So far my own personal experience is this. I sought advice about what help A could access post school. I looked at routes for study, possible places of study, I asked about whether or not he would be able access university, if he would be able to study elsewhere, what support would be available to him if he wanted to study in another city and needs to live on campus. Slowly I am discovering what possibilities could be achievable but through my own work. The services in the Lothians that I have been using firstly pointed towards benefits for him to access on leaving school. Then it was access to mental health services. One even mentioned alternative therapies, discounted cranial osteopathy and the likes. It makes me wonder if their first point of reference is state benefits to a lot of parents who have the same questions as myself. I was staggered by the amount of blank faces and pregnant pauses regarding employment support, independent living during university and the like. I’m lucky that I’m young and I am able to physically and mentally able to support him if he decides this pathway. Many aren’t so lucky and I’m been at this for long enough to know that eventually I will compile a folder of informations and specialists and organisations to seek out but it will take time and hard work. While I don’t intend to throw him out the door on his 18th birthday, I am trying to investigate possibilities for him to live (with some external assistance) alongside his peer group. The reality is though that having independence from me, may not be a possibility unless I can find adequate support for him in further or higher education and in employment.
Don’t light it up blue for my boy.
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.
The organisation offends and angers many, many autistic adults and adolescents, those who luckily have the ability to articulate and self-advocate. The Autistic Hoya in her blog, puts it like this: “Light it up blue” does nothing to help Autistic people or bring attention to the most important issues facing our community. The color blue in relation to autism can only be seen in Autism Speaks’s logo — a blue puzzle piece — and has nothing to do with us. We prefer to be thought of as people, not puzzles. This campaign is offensive and alienating to us rather than supportive of us. I strongly encourage you to consider alternative means of supporting the autism and Autistic communities, such as hosting roundtable discussions with Autistic self-advocates and our allies, sponsoring talks by leaders in the autism rights movement, showing documentaries such as Loving Lampposts: Living Autistic or Wretches and Jabberers, or adding material about autism rights and neurodiversity into any disability studies coursework on campus.
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.