Kate E. Reynolds

  • A Need for Counselling

    The other day I recounted how, when my son was diagnosed as having autism, I was told he would be in an institution within the year. Jude was just 3 years old at the time.

    Having worked in Hiv/Aids for several years and given innumerable Hiv positive results, I suppose my expectations were high that I’d be given some support through the process of whatever my son’s diagnosis. There was nothing, just an unrehearsed series of questions from me, answered in the oily way that doctors produce to ensure they’re not tied down to a prognosis. “He could get better, he could get worse” was the gist.

    I was sent packing from the office, armed with a diagnosis of “classic” autism and instructions to look on the internet.

    My experience is not unique. I see similar stories across the pages of autism websites; parents, crying out for explanations of what autism is, which “type” their child has and how to best help their child. Much of what I read is underpinned by anger, directed at the medical profession and teaching staff, coupled with despair and helplessness.

    Without some level of counselling or support, parents have no room to grieve the diagnosis of their child. Autism is, after all, a life-long condition, which can range from the socially inept person who can talk fluently with encyclopaedic knowledge about their chosen subject, to the person who is has learning difficulties, low IQ, no verbal language and exists in their own social world.

    Parents/caregivers will mourn the future their child could’ve had, the milestones and rites of passage their child won’t reach – relationships, marriage, children, jobs - and reactions of family, friends and wider society to our child. We also have the concerns about our child’s ability to manage when we die or if we become unwell.

    More than that, parents - especially mothers - will mourn the loss of their own freedom and free will to carve their future. These are difficult feelings to acknowledge. Ordinarily, we have children with an expectation that they will develop into independent, rounded individuals who leave the nest, build their own lives and have families of their own. With autistic children, there may be no likelihood of their living independently - in fact their dependence may continue at a high level until the death of the parents, giving them the burden of creating a social network and care that will provide for their child on their deaths. Unlike some congenital conditions, most conditions on the autism spectrum do not reduce life expectancy. It could be argued that those parents whose children do have shortened lives are "fortunate" in that they can see their child safely (so as to speak) into the grave. Many parents might prefer this, to the constant pain of worrying who will ably care for their child when they are no longer here.

    These major issues corrode relationships between parents and often between parents/caregivers and their families. And there is one final aspect to relations between parents/caregivers - that of blame. The rapidly increasing autism data is partly due to better and earlier diagnosis. Our greater understanding of autism also enlightens us to the genetic component of the condition. Years ago, many autistic people were thought to be results of problems at birth, autism itself being believed to be the result of poor mothering. However, we know today that genetics play a key role in many cases of autism and can be a cause of tension between couples.

    Grieving is recognised as a process involving several stages, as identified by Kubler-Ross in 1969 (updated (2005) On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Simon & Schuster Ltd) As a concept, it's accepted in diagnosis of terminal illness, in separation in relationships, in other major changes in life - yet appears to be ignored in cases when parents learn that their child has long-term difference/difficulties/disabilities (there's a debate about what terminology is most appropriate.)

    Without counselling or specialist support at the initial point of being told the diagnosis, parents continue to mourn at the very time they are expected to make key decisions for their child. They can get stuck in the grieving process - often, in my experience, at the stage of anger - and this can inhibit their ability to adequately address their child's needs. Unless parents/caregivers are enabled to adjust to the diagnosis, their new situation and the social/emotional/learning levels of their child, they cannot make appropriate therapeutic/educational decisions for that child.

    For the first four years after my son's diagnosis, I couldn't even glimpse his baby photos without crying - they held all the hope and optimism one has with a new addition to the family. Although I recognised I was mourning for him, I couldn't give myself the time to indulge, as I saw it, because I was the only person making decisions for him - if I fell apart, there was no-one to care for him. I am not alone - grieving is a painful and difficult path, which we all have to tread to finally accept our child's situation, which is umbilically linked to our own.

    How is it, that autism – a neurological medical condition – is treated differently to other illnesses? How many patients would be told they had cancer, diabetes or epilepsy and left without any emotional support whatsoever? These medical conditions have specialist nursing staff and sometimes counsellors, whose role is to intervene with support and advice, and who have status within the field.

    We will have to see if the Coalition Government's Autism Strategy has any such role within its strategies. Until the grief of diagnosis is addressed, I fear we will continue to disable parents/caregivers as we tell them that it is their child, who has a disability.

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Kate E Reynolds - blogging

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