Heroes and villains

    You have to admire people like me. Being a disabled parent of a
    12-year-old boy with an autistic spectrum disorder places me in the
    current canon of unsung saints. I think this is a result of a new
    awareness around autism, which has probably reached its peak with
    the success of Mark Haddon’s novel, The Curious Incident of the
    Dog in the Night-time
    , about a boy with Asperger’s syndrome.
    And, of course, the MMR debate.

    But the flip side to this is that the highbrow media has now begun
    to construct the “super parent” who can handle a career, family
    life and a child with autism with deft aplomb. Promoting this as
    the norm is wandering into dangerous territory. My son’s reality –
    and his impact on his family – is naturally far more complicated.
    Much of my spare time and that of my partner is spent getting the
    system to remove barriers and begin to provide the services he
    needs.

    Take education. It took years to get the head teacher of his
    mainstream school to acknowledge that his withdrawal in the
    classroom was more than just naughty or singular behaviour and to
    start dealing with the problem. It took a further year to get a
    statement of special educational needs, which we had to initiate
    ourselves, and one more to have him correctly diagnosed as having
    an autistic spectrum disorder. We then had to fight for a place in
    an out-of-county school which specialised in meeting his
    educational needs instead of one in the cocooning environment of
    the local special school. Thankfully, he is now in the right
    school, but I still regret the lost opportunities – the benefits
    that early intervention would have had on his social communication
    skills and development.

    In my county, area social services support is scant for autistic
    kids who have an IQ above 70. It infuriates me that some local
    authorities prate of social inclusion and valuing diversity while
    simultaneously keeping whole sections of disabled people away from
    services by using crude, medicalised IQ indicators. What we need is
    a spectrum of support; what we get is six hours a week. Helpful as
    it is, we are regularly reminded that we are lucky to get this. Oh,
    and please don’t tell other parents and families in case they ask
    for help too and overwhelm us.

    This is the reality of living with a child with autism. It is not
    cuddly; it is tough, challenging, stressful and often humorous. I
    can deal with the tantrums, the rages, the occasional violence, the
    running away. I don’t even mind being occasionally admired. What I
    can’t handle is a system that is supposed to deliver on my son’s
    rights to services but instead puts obstacles in the way.

    I wanted to go to a three-day international conference on autism
    being held in my home city recently but couldn’t. I have stay at
    home to look after my autistic son because I have no support
    services.

    Graham Findlay is a disabled parent.

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