Next up in the blog series in one of the most challenging topics to write about yet one of the most important from a personal perspective. This post isn’t for everyone. Some will read it and come back to me, yet again, with comments and feedback of; “Pandering for sympathy?” or “Pity Party much?” or some other form of brush off. Regardless, this is a HUGE topic for our family, for Shane and for every other family of a person on the Autism Spectrum.
When a person is diagnosed with Autism at any age there are so many questions… with few answers right away. It takes some time for things to play out before some answers come. An Autism diagnosis at a very young age can be disheartening for individuals and families at first but there also comes some reassurance as the resources to help are more prevalent and available at a young age. This trend typically continues through adolescence. I’ll agree that this is not the case everywhere in the US or around the world. In fact, having such varying degrees of Autism support and services from State to State in the US is tremendously disappointing. We are lucky to have been in two states so far that have offered tremendous services for the Autism Community – Delaware and Minnesota. In each of these states we have seen, and been a part of, the communities and witnessed first hand some of the amazing efforts that go into treating and supporting those with Autism and their families. Again, we have been lucky.
However, as most individuals and families in the Autism Community know, there is a “softening” of services and supports as the Autistic person ages through adolescence into adulthood. And, depending on services and supports needed for each person – those same opportunities could become less and less available. An example is how a “higher functioning” person on the Spectrum may be able to communicate effectively, take direction and even handle self care initiatives. Then that person can be supported in the community into adulthood and beyond with services in work programs, certain group homes or assisted living opportunities and, in some cases they can fully be on their own. There are some fantastic results from early intervention and therapies that lead to successes like these. But there are also results that set individuals and families farther back. There are those that are not on track for the same success stories. These individuals and families are dealing with more pronounced challenges with behavior, life skills, communication, self help and much more. These individuals, for the lack of a better term at the moment are characterized as potentially “lower functioning” and require much more of a hands-on support system whenever possible and usually it comes from the immediate family. When these individuals reach adulthood (18+) the support resources drastically shrink in availability. And, if they are lucky to be in programs where they can participate through the age of 21, that is wonderful. But then what happens? Where do they go? What do they do after that? Short answer – there is no set place or program that is offered. Long answer – there NEEDS to be programs and supports for this more specific group of Autistic individuals.
My point here is that there has been a tremendous effort in formulating plans and programs and resources for those persons with the abilities, behaviors and attributes that encourage self help and sustainability. Here is where we see certain individuals taking on part time jobs, further their education, attending day programs, living in groups homes or even on their own. There is typically a support systems put in place for them through social workers, advocates and guardians who can help guide them as needed. Where there is an obvious lack of effort has been in providing support and programming on the same level – but for those that are more challenged. For those that cannot communicate, or have behavioral challenges, or require more hands on help with life skills like feeding, bathing, dressing, grooming and more. These are the ones that cannot be placed into a group home because of the behaviors and possible aggressions. They can’t attend day programs because they still need primary care and assistance with basic functions. Where do they go and what do they do? Families that are not able to find the next path are finding themselves in desperate situations. Some parents are aging to the point that they cannot handle the individual or the specific needs that are required. Some cannot afford the additional personnel needed to help the individual be more successful. What I hear about and read about these families is they’re stuck. And we know exactly where they are coming from and what they are saying. We can feel the emotional stress in their stories. We can picture the exact same scenarios they talk about because we go through them every day as well. It does not “get easier” for these families and, in fact, for most of the families like ours it gets much harder.
To bring more light into a potential blog of darkness here, I’d like talk of potential hope and a vision of what COULD be. Brooke and I have talked for years about these situations. And we have talked and talked and talked for years about what we envision as a way to help families (ours included) through these times. We are at this point with Shane right now and we, like others I’ve talked about above, are unsure of what to do next for Shane. Our “Powerball Dream”, if you will, is seeing a community/neighborhood built that would be for those primarily on the Autism Spectrum. OK, I know, your first thought is probably: “You want to put all Autistic people in one place? That’s not really fair!” and, NO, that is not it. We can envision a community that is built to support those with the specific characteristics that prevent them from living and thriving on their own. This is a way to allow some sort of independence and allow them to be in an environment that is for them. But it would take stress off the family – parents, guardians, siblings, etc. Picture a college campus with dorms and classrooms buildings and recreation areas and people coming and going. But all these people are being supported and cared for one-on-one (as much as possible) in every aspect of their day and their lives. It is their home, their school, and their community to be in. Other people would live, work and be a part of this community but it is built with the goal of supporting the Autism community and the ever changing diverse needs they all have. We are not at all professionals trained in Autism research and medical directives but we are trained parents who have seen and lived the realities of the challenges faced. And there are ways to improve lives and help others thrive! It’s already built and it is already successful… in our minds. We now have to make it a reality.
I've Been Thinking 