Sometimes Autism sucks and so do services for autistic families. That’s my view after being home alone for over four
days with autism, thanks to the recent red alert warnings, and overhearing Jennifer Doran from the National Council for Special Education on Highland Radio speaking about the education support services available to children and young people with autism and their families in Donegal. The NCSE representative shared details of an information pamphlet outlining such services but what she didn’t say was that in reality parents have to fight tooth and nail to get them. At least that is my experience of the system, both in education and health. It all looks good on paper but most parents find there is little or no specific autism supports available due to lack of resources. Furthermore, there is less available for the autistic family.
I was tuned to Highland Radio to keep up to date with the latest weather reports, not that I was going anywhere. Buses were cancelled, school was out and I was trying to get on with doing what I could do with one eye! The other eye had to be constantly on Mowghi.
His screaming fits where something to be reckoned with but the main problem with my ‘ausome’ boy is that he has many obsessions and compulsions that escalate when he is housebound and not stimulated. Some are dangerous and destructive as he has a tendency to throw everything and anything into the bin or fire. Consequently, autism has turned our home into Fort Knox.
When the oil man arrived in the middle of the red alert lock in, it took me twenty minutes to open the gate for him. I had to lock all the kitchen cupboards before I left the kitchen to hunt for the keys I needed to get in and out of every other locked door. I asked Missy to keep an eye on her brother for as long as it took me to walk ten steps from the back door to the gate and back. During that time Mowghi head butted Missy.
Autism is considered a “condition” that affects only the individual when, in fact, autism creates a dynamic that affects the entire family. Parents of autistic children are not merely parents. They are full time caregivers, night and day. Parents must learn to cope with sleep issues, emotional outbursts and frustrated behaviour on a moment to moment basis that can include screaming fits, property destruction and physical aggression. Siblings like Missy can also find themselves on the receiving end.
While it is not the autistic person’s “fault” for their difficulties that accompany autism, it is not the fault of the family that they are thrown into such a challenging caring role. It’s time a realistic picture of the challenges faced by autistics and their family members is painted. At the moment, I haven’t a clue what is available for my son when he turns eighteen. No one has been in contact to tell me either even though my son is trundling towards his seventeenth birthday in a few months time.
It is simply not responsible or realistic to speak about supports and services without acknowledging the difficulties families face in obtaining same in the shadow of educational cutbacks and a compromised health service. It’s time autism families received practical supports that would assist autism families care for their love one/s with additional needs by providing family centred respite, care breaks, activity programmes, disabled parking permits, emergency care and family support solutions. Right now, I’m not aware of such programmes and schemes existing for autism families. They are just a figment of my imagination.