Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

3/2/08

Autism In The Marketplace

My husband sent this article to me, it's on Newsday.com. It's an interesting piece, and I'm fairly certain this is the first one of its kind I've come across. It discusses adult autistics (yes, Jenny, they really do exist), dealing with finances, living independently, and the difficult issue of legal guardianship. The story is from the parent's perspective. It deals mainly with adult autistics who would seem to need little, if any, services. Yet, they still run into major issues with finances and have difficulty with other day to day interactions.

The story closely mirrors the ones I hear from families whose child is considered by the school to be "high functioning" and is dropped from special-ed or services. These children skim by, many drop-out or have major issues, especially in high school. If you can do fairly well with school assignments, sit still in class, they presume one doesn't need any extra help. They pay no attention to how one relates to others on the playground or cafeteria. If grades slip, its often blamed on the child losing interest or not paying attention. It often takes quite a fight to get services for the child, and prove to the school that help is needed. It appears, this same mind-set holds for when these children become adults.

While there are many adult autistics who are able to hold jobs and live independently, or others who are able to do so thanks to support services and help from their family, there are plenty that are slipping through the cracks. How many are homeless or institutionalized? What is the crime (against them), murder, or suicide rates? What number of them suffer with psychological issues, alcoholism, or drug addiction? These are areas that few have looked into, most would rather look the other way. It's not their problem right? And, now that we have "treatment" and someday soon a "cure," why do we need to concern ourselves with that right? It will be their problem, not mine. "I've got my kid on 50 pills a day plus some injections, a hyperbaric chamber, sauna, chelation, and more, I don't need to worry about him 'having autism' when he's 18, right?"

I realize "early intervention" and all is important, but to be honest, I worry more about what comes after age 18 or 21. My daughter did receive early intervention from the state, as well as private therapy, and we did a lot of "play therapy" at home. It wasn't really therapy we did at home, so much as it was we found new ways of playing and engaging our baby/toddler. We had to learn a different way to play with her, its been that way since infancy. My child thinks and acts differently, therefore, we have learned new and different ways of interacting with her. Basically, I feel if you have an open mind and a kind heart, you can help your child in those early years. The help is there if you seek it, and there's plenty you can do at home. Just be open to new ideas, be patient, and compassionate.

It's what will happen once my child turns 18 or 21, when the school will no longer assist us, that concerns me. I'm not going to assume her level of independence, at this point. We will support her in every way, and she will continue to make us proud--where ever the road leads her. We of course have some concerns over her physical and neurological health, but are hopeful those will improve with time. Putting those aside and solely thinking in terms of autism (along with her sensory and psychological issues), and her future--every aspect of what will happen in adulthood is concerning to me. If she is able to live independently, will services be available to assist her if need be? Will college be a feasible option? Will she be able to find a job, are there vocational programs? What would happen in an emergency, or if she had to deal with first-responders? Will she be able to find proper medical care and pharmaceutical assistance? What resources will be available?

This story highlights some of those concerns. I think whether your child will continue to reside at home or live independently in adulthood, there are a mountain of questions, and very few answers. We all know the majority of money that autism charities receive is going toward research, studies, media, etc. Very little goes to actually benefiting autistic children and their families, almost nothing goes toward autistic adults. Since the pro-cure groups, at least some of them, are now admitting that our autistic children are becoming autistic adults, perhaps there will be more stories on this. Hopefully, as their children enter adulthood, they'll realize the need and use their media savvy and celebrity friends to get more programs and more money flowing in to benefit adult autistics.


FYI: The link to the article is found in the title, if that doesn't work:
http://mobile.newsday.com/news.jsp?key=152152&rc=bu&p=1

2 comments:

atelier jax said...

Thanks for sharing your link and post. I am a mom to a 4YO with Autism. You are right! What kind of support will be available for our kids when they are older. Imagine, no mom and dad or quardian to support them, no net - where will they go? What will happen all too often falls under hospitals/police and someone not having a guardian. My brother lives in a Psychiatric hospital because he needs to have Medicare and state support - and my mother cannot take care of a 47 YO sometimes unmedicated agressive schizophrenic. It alarmed me one day when I did a search on wikipedia - and the term "homelessness" fell under Autism. How scary is that! I am not suggesting that this is the future, but what are the options out there, the parents of kids on the spectrum are not going to outlive our children. _Also can I link to your blogpost???

On another note - nice to find your blog. You can view my blog at www.atelierjax.blogspot.com - also www.atelierjax.com. I just started some pieces to bring awareness to Autism. Please visit and stay in touch.
Jax Chachitz

S.L. said...

Hi Jax,
First off, sure, you may link to my blogpost! I appreciate you sharing about your brother, you know all too well what the realities are. It's scary to think of the future, but I'm certain that us parents can come together and change it, create the right services. I will fight each day for that.

I visited your website, will check out your blog as well. I'm an artist myself, and really love your work. I'm from NJ, spent much of my younger years in NYC. Miss the art scene & all there. Take care.