Tuesday, February 21, 2012
A diagnosis of ASD is a start to dealing with the challenges that lie ahead, says Bernie Cahill
LEARNING that your child has specific difficulties with communication and socialisation, which will affect them throughout their lives, is not easy for any parent to deal with.
Yet a diagnosis of ASD (autism spectrum disorder) is usually met with a sense of relief, mixed in with sadness.
It is a starting point. More than the vital ticket of entry to much needed services and supports, it is a painful but positive step on the path to accepting both your child’s needs and strengths. Rather than providing too narrow a context, as maintained by Tony Humphreys recently, a diagnosis of ASD offers a broad framework within which parents often feel we can more fully understand our children, perhaps for the first time.
It can empower us to become the true experts on our children, in so far as that is ever possible for any parent (or psychologist). We have a structure within which to work now, rather than a sense of helpless confusion. Far from being a meaningless label that only serves to stigmatise and limit our children, I believe the diagnosis of ASD bestows clarity, recognition and the possibility of being understood.
Others, in the extended family and wider community, are challenged to join us on the steep learning curve. The diagnosis becomes the tool to enlighten and educate them — it is sometimes the tool we need to beat over the heads of reluctant or hard pressed school principals.
We can hope that with careful groundwork, our children will be welcomed, accepted and included as fully as possible later on as young adults, into what can sometimes be a dispassionate world.
From the initial assessment seven years ago, to the diagnosis that followed, and throughout the interventions we have since received from occupational therapists, speech and language therapists, psychologists and resource teachers, there has been a tireless quest by all these professionals to understand our son in every context of his life.
We, as his parents, have been intimately involved in that process. Indeed, being the parents of a child with ASD has required of us a heightened awareness of self-esteem issues, ongoing self-reflection and a constant striving for a healthy, loving home environment for each member of the family.
The recent, controversial assertions with regard to the causes of ASD, and questioning its very existence, have not been helpful, wise or informative. The feelings of hurt and indignation amongst parents and professionals within the sphere of ASD have been well documented in the media during the past two weeks.
Ironically, many of us are undoubtedly feeling more "damaged", less nurtured and in dire need of counselling following the unsolicited intervention of the aforementioned counsellor.
One can only hope that the majority of parents, whose children have a diagnosis of ASD, or who anxiously await the assessment process, who could not express their anger through media channels, were able to find someone closer to home to listen to them and affirm them.
The experience of organising a parent support group with other parents in the North Lee ASD Catchment Area (which serves 450-plus families) for the past five years, has convinced me of the powerful resource that parents can offer to each other.
I would guess that the sincere wish of most of these families would be that the esteemed academics and authors would float their latest musings over their coffee cups and not on the national airwaves. The systems in place may not be perfect, or even fully proven, but they remain a practical working model and they are all we have.
More pressing issues to be put under the spotlight might be:
* The lengthy waiting times for families in the anxious limbo between referral and assessment with no access to support services.
* The lengthy waiting times (post diagnosis) for intervention from hard pressed service providers.
* The constant threat of (and actual) cuts to the excellent resource teachers and SNAs who enable our children to thrive at primary level.
* The continuing reluctance in the majority of secondary school principals to provide essential supports that will enable our vulnerable teenagers to be truly included in the micro world that is school.
As most parents do, we will continue to strive to provide the best for our children.
* Bernie Cahill, mother to Seán, is secretary of the Parent 2 Parent Group
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