On Autism Awareness Day

1 Apr

Today is World Autism Awareness Day. To mark it I wanted to write about a subject regarding autism that is close to my heart.

Intellectual Disability (other wise known as Learning Disability, particularly in the UK). MENCAP say:

There are many different types and most develop before a baby is born, during birth or because of a serious illness in early childhood. A learning disability is lifelong and usually has a significant impact on a person’s life.

Learning disability is not mental illness or dyslexia.

People with a learning disability find it harder than others to learn, understand and communicate. People with profound and multiple learning disabilities (PMLD) need full-time help with every aspect of their lives – including eating, drinking, washing, dressing and toileting.

There are 1.5 million people with a learning disability in the UK. Like all of us, they are individuals who want different things in life and need different levels of support.

New science released states that just over 10% of people with an intellectual disability also have autism. That pertains to 150,000 UK citizens. One of those UK citizens is my autistic child.

On Autism Awareness day please be aware that people with autism often – very often – have other challenges, including Learning Disabilities, that significantly affect their daily lives. I’m aware that governments in the UK, in the USA and in Canada are implementing deep cuts to disability related spending. This does not exclude the most vulnerable members of our society, those with Learning Disabilities. Maybe, as we form an alliance to deal with the situation in Libya, and we come together to help the people of Japan (both things I wholeheartedly agree we should do) we might come together as an international body to make a pledge that on World Autism Awareness Day we will strive to not leave these world citizens behind and we will not take away their very means by which they can help themselves and be helped by others.

8 Responses to “On Autism Awareness Day”

  1. Rosabw April 2, 2011 at 14:44 #

    Although my son has a very high IQ, he also has learning disabilities. That’s why it took me a very long time to admit my tendencies. School was easy for me. School wasn’t easy for my son.

    Dear Kev. I don’t know how to tell you what my heart wants to say. Regarding your beautiful daughter.

    I taught in a self-enclosed PMD classroom for one year. I met the coolest little big hearted souls I’ve ever known. Their parent’s weren’t too bad, either! Teachers who were dedicated to the kids, too. I wouldn’t trade that year, and what I learned about abilities that transcend our ideas…for fame or fortune. It made me VERY rich. Do you hear me?

  2. Kev April 2, 2011 at 16:40 #

    I hear you 🙂

  3. David N. Andrews M. Ed., C. P. S. E. April 3, 2011 at 19:39 #

    Well… Autism Awareness Day went entirely un-noticed here in Finland. Why am I not surprised? Because nothing this country can manage to ignore can possibly surprise me any more. We have a very ineffectual lobbying organisation that does very little to raise the profile of autism in Finland, and it certainly lacks a lot of the expertise that exists in the UK’s NAS. We have no formal qualifying courses in Finland for those who wish to work with autistic people (or for people who wish to act as consultants to those who do, but lack the qualifications and/or expertise). It is not uncommon here, it seems, for autistic adults to be ignored by the state’s own ‘services’ (e. g., the Ministry of Labour offices and the Social Insurance Institution offices); same goes for the municipality-level ‘services’ (disability services and social welfare offices).

    It is not uncommon for the Finnish ‘services’ to fail to provide appropriate/adequate support plans for autistic adults (I have not had a support plan at all in the 12 years that I’ve lived here). This means that I have not had any proper services, based on evidence-based practice backed up by any proper research. In the Finnish context, a disability support services plan is a legally-binding document that forces the local authority – and any state-level authorities – to spend money on the person named in the plan.

    Local and state-level authorities do not like to spend money, except on themselves. Recently, the local council in Kotka, where I live, elected themselves a hefty 500 euros/month pay rise. How did this pay-rise get funded? By cutting the already abysmally low-level and low-quality ‘services’ on offer until that point. It is no coincidence that my ‘services’ (such as they were) ended up being cut as soon as that vote went through.

    Not only are the public ‘services’ guilty of wilful ignorance, but so are the private organisations whose remit is to provide ‘specialist expert services’ to autistic adults. From January 2005 to December 2007 (3 years, in fact, except for about two weeks), I was a client of the Autism Foundation’s Kotka Unit. During that time, the quality of my life lessened to the point where I was suffering problems similar to those experienced by people who had been diagnosed with PTSD. The support worker assigned to me attempted – without any assessment of need – to ‘get working on things’ with me. For three years, I tried to explain to this person that what she was doing was counter-productive: as an example, she had decided for me (not with me!) that I was to be taught to live on what recent research in Finland has revealed to be an inadequate amount of money for anyone to live on. Only when I had managed to master this impossible task that I would be given any support to find work. In order to defend her decision, she had one of our meetings dedicated to trying to explain to me that I must learn to walk before I can run.

    For some time, she had known that I was training as a psychologist. Finally, in December 2006, I got my Master of Education degree – with Distinction – and with a specialism in autism in adult life. This worker was a basic sosionomi/socionom, which is at best a bachelor-level qualification, and she had no specialist training in autism work. So imagine the scene: I am sitting at this table with this woman, and she gets a pencil and a piece of paper and draws a triangle. I say, “Ah, Maslow!”. And she replies, “You know about Maslow?!” …

    The response I wanted to give her is not repeatable here. I proceeded to inform her that, not only did I know about Maslow, but I knew about his Hierarchy of Needs in 1993 and that I also knew about the criticisms and limitations of his theory. I then informed her that the theory was not about ‘learning to walk before running’, but it was about satisfying basic needs at one level before being in a position to go on and satisfy any higher-level needs. I informed her that the first-level needs (the ones labelled as ‘physiological’ by Maslow … food, drink, shelter, warmth, sex, etc) had one thing in common (besides the fact that without them, one might actually die), which was that they all cost money; and that, when the state were refusing to pay disability-based benefits (and the social welfare office were taking the same tack), the most important thing was to get the client in some sort of work that he can do and that would bring in enough money to make it possible to live.

    This point she ignored.

    I’m still paying for her fuck-up.

    Just a little insight into what Autism Awareness is in Finland.

    Where-ever you are, if you are autistic, be thankful that you are there. You probably actually get at least something useful. I don’t.

    Just an additional bit of information… this you will find … inexplicable, really. Many Finnish people I know cannot understand this happening, but it actually has happened: the Finnish ministry of Labour actually prevented me from being able to take up a job!

    I am listed with the Tax Office in Finland as a ‘freelancer’; that is, I take work on as and when I find it, and it is basically restricted to occasional projects of an individual nature and doesn’t really pay well at all. My ex-wife runs a business that has been showing signs of improvement in its functional viability. She wished to hire me on a half-time basis, at a pay-level of 800 euros per month. She would be responsible for 200 euros of my monthly pay-cheque, and the idea was that the Ministry of Labour would – as per their advertisements – stump up the other 75% … a total of 600 euros per month. My ex-wife would then be liable for the employer costs: tax, insurance and pension payments, etc.

    This would have allowed me to do any freelance work alongside my steady job. It would have allowed me to become a productive member of society (at least, especially compared to the very problematic freelance employment scene here in Finland just now!). It would have led to me paying more tax and claiming less in benefit payments. And that’s just the socially-relevant aspects of this idea. It would also have had psychological effects on me as a member of society… someone actually able to be working for more than the usual freelancer could hope to be, doing the job that I do.

    How did the Ministry of Labour respond to this plan? Well … after inspection of her business account, they offered my ex-wife the grand sum of 380 euros per month towards all costs associated with employing me. These costs – at 600 euros per month in wage-support – would have been 200 euros plus about 250 euros: a total of 450 euros per month, in order to employ me for 800 euros per month. On what the Ministry of Labour offered, that set of costs was increase by another 220 euros per month… an amount that would have bankrupted her business inside two months. It would have cost her 650 euros per month to employ me for 800 euros per month. And this she could not afford. The job on offer was withdrawn because of this. Yes. The Finnish Ministry of Labour managed to keep someone out of regular work! Sick? Yes. At least – according to the rest of the world. To the Finnish system – it’s ‘normal practice’.

    Autism Awareness in Finland amounts to this: if you are an autistic adult, you will not find employment and we will not help you in any way because you are clearly too disabled for anything you think you might be good at … and don’t expect any financial help either, because you are not even as able as the rest of us to enjoy any life.

  4. Laurentius Rex April 4, 2011 at 00:18 #

    So What?

    It ain’t autism awareness day now I am posting this, so what difference did this socially conventional feel good fest of “I had better put something up on my blog about autism day because it will look bad if I don’t” have to do with anything?

  5. Rosabw April 4, 2011 at 00:46 #

    I was HIGHLY unconventional. I put up my Autism Understanding and Acceptance day because I’m cool. Nah, really…I just don’t understand autism speaks and wanted to be unconventional, just like all the others. 🙂

    Not everybody does something about it. I don’t have the faith in myself to truly change the world, except for my own. Please forgive my self-defecation.

    Sorry, just had to do that. It was a skit at home.

  6. David N. Andrews M. Ed., C. P. S. E. April 4, 2011 at 02:39 #

    Laurentius Rex….

    Thing is … there is no fucking autism awareness.

    Not where it needs to be, at least.

    And that is because of political fuckwittery.

  7. Theo April 4, 2011 at 18:15 #

    I use to say that there is not a cock roach on this planet now that doesn’t know what autism is.

    Enough of Awareness!! It’s time for ACTION now!!

    Rant aside, I am a person with a dual diagnoses, Asperger’s Syndrome, and Post Traumatic Stess Disorder, and I have found it rather common, actually that those with AS have that diagnoses. Alot of it probably has to do with how we have been treated by our non aspie peers.

  8. David N. Andrews M. Ed., C. P. S. E. April 5, 2011 at 00:28 #

    Absolutely, Theo!

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