The View from the Sidelines

24 Jan

Recently in several online groups I subscribe to some very ugly fights have broken out. Fights that, frankly, I feel are unnecessary. Here is the deal: not all kids with autism are equal and access to services is DEFINITELY NOT equal either. Of the several options available in my state for services, The Princess receives next to nothing, only what the school system can provide. Why? There is a severe shortage of funds to pay for these services but an extreme demand for the services. Even if we were not in a huge budget shortfall, the demand means there would still be competition and waiting lists for the majority of services. Maybe not as extreme, but they would still exist.

The fights I have been witnessing are between parents, grandparents and care-givers of autistic children in situations like The Princess’s where they need many more services but are not receiving them on one side and parents of kids who get the services and feel attacked by parents who complain. And in some cases there are factions of parents getting multitudes of services who are complaining about what they get.

Honestly, my first reaction (keeping in mind I have a child with autism) is this: first world problems. Everyone be quiet and be glad your child is autistic in America and not in a developing country where they would have no chance and definitely no services. Or in a country where something like autism would lead to direct ostracizing by the community and potentially worse.

But stepping off my self-righteous platform, I know from first hand experience what it means to not get services your child needs. I know the frustration of being over #500 on the waiting list and having friends who have children getting those services. I even know what it feels like to see a child with a questionable diagnosis get services that your child is desperate for and you have no way of obtaining. That being said, I am not going to blame the parents or children getting the services and accuse them of depriving my child. They applied same as I did and for whatever reason got the services while I still wait for funding to open up or my place on the waiting list to come up. It is not necessarily their fault.

Instead of people engaging in these unproductive tete a tete’s perhaps more would be accomplished if, on both sides, they were contacting political office holders and airing your grievances there…trust me, if enough people are doing it, they will listen. When someone is disturbed about the distribution of services or the transparency of how people are judged for eligibility, they should contact the agency doing these things and file formal grievances. Not disparage people they do not know.

What I see from the sidelines of this fight is a very dim future for all of our kids with autism. I see people who cannot focus their energy appropriately, and as a result, their child suffers even more, and in effect, so does mine. If we could stop fighting each other and having pissing contests about “who has it worse” and unite to make changes to the laws and the policies, it is amazing what we could accomplish. But because we can’t see past our own entitlement issues and comparisons, the puzzle is no closer to being put together than when we started.


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