Following on from his recent article on his son with Aspergers, Noel, an AsiAm.ie board member, writes honestly and frankly about the challenges of raising a daughter with “moderate to mild” Autism in Ireland today. Read, share and comment
Our lovely daughter was born in Holles Street in 1994, and the initial reaction was that she was our third and most wonderful child.
Fast forward almost two years and we could see that our daughter was not developing in a normal way, there were clear developmental delays to be observed. We had knowledge of autism from within the family background, and as autism has a genetic element we were aware that this might be the issue.
A Health Nurse came to the house on an unannounced visit in and around our daughters second birthday, and I explained our concerns that our daughter might be on the autism spectrum, possibly she had Asperger Syndrome.
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It is hard to believe now but in 1997 the Health Nurse had no idea what that was, such has been the increased frequency of diagnosis of Asperger Syndrome since that time, but as late as 1997 it was an unknown condition to Health Nurse’s in the Irish system.
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What followed was a slow and painful process of diagnosis; inevitably we started with the hearing tests and then spent a long period of time going from service to service to reach a less than happy conclusion.
The late 1990’s saw an enormous investment in autism services in Ireland, it reflected the Celtic tiger economy and more significantly a sharp spike in demand for these services, there was a marked rise is ASD diagnosis. As a parent I can only note with sadness that this investment did not fix the dysfunction within the Autism service providers, there were lots of new job titles, promotions and recruitment, but they singularly failed to provide a cohesive service for parents of autistic children.
As with many parents we found ourselves constantly fighting for services, initial access to essential Speech and Language Therapy was a 9 month waiting list, and we were actively warned off from accessing our own SLT from the private sector as we would be viewed as being “outside the system”.
Hindsight is great vision, but having been asked for our personal stories we can only advise parents facing an autism spectrum challenge today that they fight for all services as early as possible, and remember the mantra, ”Put everything in writing and keep everything in writing”. It may sound cynical and you will meet many fine individuals as you navigate through Ireland’s autism support services but nothing will concentrate the system like a paper trail of facts.
By the age of 4 our daughter was clearly more autistic that previously feared, in fact she is profoundly autistic. Her official HSE diagnosis is she has “mild to moderate” autism, it’s a one size fits all diagnosis that suits their system, if you do not measure it you do not have to manage it. Sadly our daughter is profoundly autistic, and no amount of reviews will change that fact.
Autism is primarily a male condition; the ratio is 4 to 1 so female autism is less common. As difficult as it has been for us as a family living with autism the arrival of teenage years and adolescences has been painful beyond measure, it arrived with severe behavioural challenges and significant degrees of violence. This may make depressing reading for parents who are only now dealing with an ASD diagnosis, but we detail our personal story as honestly as possible.
The challenge of an Autism diagnosis should be enough for most families, but sadly the system of support in situ is often not fit for purpose, so parents must become very active advocates for their child, and weave their way through. Seeking out local autism support groups is also highly recommended, autism has an unhappy ability to isolate both the child and the family.
Image courtesy of photoraidz / FreeDigitalPhotos.net
