Beware The Gaps.

I left my job six weeks before Harri was born. Since that time the thought of returning to employment has crossed my mind from time to time. When he was younger and demanded my constant emotional and physical resources, I fantasised about working. The idea of driving away from the house and spending an entire day focussed on something, anything, other than a miserable baby,  had high appeal. Then Harri's diagnosis late last year came and the early intervention required along with it. So essentially my job became one of learning about Autism and ABA and applying it at home, and concurrently taking him to his on site sessions. Harri has the rest of this year and then the next before he starts kindergarten. This means being committed to ensuring he gets as much intervention as needed now to prepare him for school. Once he commences pre school I am once again left with the idea of returning to the work force. The question is to do what?

My background is in Social Work, but I left that profession to start a business with my husband some years prior to Harri's arrival. I was burnt out and had no interest in continuing to work in the human services field. But now my interest has once again been piqued by constant exposure to social inequity and injustice. And by what appears to be, based on reading many online conversations, glaring gaps in service provision for those living with Autism.

As far as I can tell to date, there seems to be three major areas of community based support that are deficient or non existent. I would be most interested to hear from others if they can think of others I may have not considered here.

The three areas consist of,

1) Family support and counselling. Not a month has gone by in recent times where we don't read of an Autistic child being neglected, abused, and sometimes killed by parents and others tasked with their care.     All early intervention programs I am aware of target therapies for the child with an ASD, but tend to ignore the fact the child lives in a home environment, which may be neither healthy or safe. If parents are struggling to come to terms with the diagnosis, if there is existing or subsequent conflict in the home, all this will affect outcomes for the child. Furthermore even the best parents could do with emotional support as they navigate the difficult first few months, and beyond, after diagnosis. In addition to counselling, practical advice such as where to find sound evidence based information about Autism and treatment, how to access aid agencies that may be able to lend assistance to families who are finding it hard to manage financially and information about crisis and respite services. Support for siblings is also included in this.

2) School advocacy. I can't tell you the amount of conversations I have seen online in relation to this issue. It seems there is a woeful lack of resources for both children, and their parents when it comes to supporting ASD kids to get the best out of mainstream learning environments. I imagine many of the issues encountered at standard schools are managed beautifully in Special Ed services, but I suspect the majority of kids on the spectrum these days, like Harri, will attend the local primary and high schools, or nearest private equivalent. The issues are complex and multi layered but a few of the more obvious are  teacher ignorance about ASD behaviours and management, limited amount of aide support, bullying and children being left to roam during unstructured (recess and lunch) times. This last point has several risks associated with it. Often children with Autism will cope OK in the structured environment of the classroom, yet in the breaks are unsure of what to do, are susceptible to teasing, becoming overwhelmed  by the sensory overload of kids running around and screaming etc and wandering. I am of the opinion that schools could better manage these factors in simple ways, for example having a dedicated 'quiet space' perhaps in the library, that children with Autism can access should they need to. Fact is, almost all our kids will go through the school system. Reducing the trauma so many suffer in their school years is imperative.

3) Employment support. It seems that once children leave the school environment all ASD government assistance (what little there is at that stage) dries up.  Of course the needs of Autistic people post graduation continue. There's no doubt that those on the spectrum are at an extreme disadvantage when applying for employment. After all they are not going to present well at the interview stage if they cannot respond to unscripted questions, make eye contact and generally appear socially adept. Yet many of those with ASD will make excellent employees. I see a need for a service that provides both support to those attempting to enter the employment market and that also educates that market about the benefits of employing people with Autism, in some way acting as a brokerage that brings both together.

Anyway as you can see my mind is already ticking over about possible employment (and policy) ventures once I start to dip my toe back into the labour market. I have no clue at this point in time how to realise any of these ideas. I  am hoping the next 18 months buys me the time needed to put more consideration into how to move them from the page into actuality.  All thoughts and suggestions welcome.