The month of April has come to a close, and with it ends Autism Awareness Month.
However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.
But we as a community are fractured. Broken. Divided.
Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.
To help us weather this storm.
Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:
- Start thinking about what the future holds for our children on the Spectrum.
Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.
- Acknowledge that not all children can be "cured" of Autism, and that most are not.
This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.
- That money has been funneled into the wrong areas for far too long.
Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?
NO.
We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.
If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?
- Start building a community; one that serves ALL in it.
I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".
- Remember that we are not perfect, and that there is so much to learn.
Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…
- Don't scare people by sending frightening messages related to Autism.
Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.
- Appreciate how far we have come…
Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.
- …but remember we have so much further to go.
We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.
- So let's get together and feel all right.
Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.
So, same time next April then?
My son will be turning 11 in less than a month. He is aging out of his classroom which is part of a collaberative in an out of district school. There is nothing for him in his age group other than ABA which we will never go back to. There are tons of services for the little kids. And in our area plenty of programs for high school age kids. Who is going to teach my son? He has made so much progress in this program I really fear he will regress if he is not in the same kind of classroom.
ReplyDeleteThere needs to be more funding for older children and adults. There needs to be more financial support for the older children who aren't "cured" to be able to stay in their homes with their families. Many people with little ones don't realize that as their children get older it may become harder to keep their children in their homes because of their behavior issues. We pray we never have to even consider residential placement for our son but it is a sad reality for many families who don't have the financial or community support to keep their children at home.
Excellent post. So true what you say about the autism $$. It's why I'm not currently supporting Autism Speaks. Until I investigate where the $$ is going (you know, in my spare time), I'm not going to pour any more in to it. Plus, I'm subscribed to their discussion boards--you want to talk about division. People are downright nasty to each other on some of those boards. It's all drama!
ReplyDeleteI love this. I agree, we really do need to band together. The lack of support between the two camps is making me sad. I am frustrated at the lack of services available for "higher-functioning" kids. Tell my son how to feel about that. The reality is, he is left out in the cold.Bottom line.T.
ReplyDeleteThe autism community is divided by design. It didn't become that way until 2005 when Neurodiversity began their assault on sanity, funded by Pharma.
ReplyDeleteThe worst mistake anyone can make in trying to bring warring sects together is to think about compromising with these sadists.
The cause was identified in 1999, thimerosal. Everything you have heard since then has been an attempt to hide the truth. That includes the "too many, too soon" nonsense.
Some people who accepted this fact have cured their kids with chelation. Forget the diets, that's just a symptom. Remove the mercury from the "gut" and it works fine without any stupid diets.
The only person anyone with autism should listen to is Andy Cutler. He is, by far, the most knowledgeable and Obama should pay him whatever he asks to end this nightmare. Of course, Obama isn't honest so that's another story.
I agree that there IS no cure for autism or "recovery". I believe that therapies and interventions can do wonders BUT your child (my child) will always be very, very, significantly different. I think that the parents desire to believe otherwise will prolong their grieving process.
ReplyDeleteKristin,
ReplyDeleteThe problem with thinking that there is no cure is that you're basing your opinion on false information.
It isn't a matter of what anyone thinks. It's a matter of looking at facts. And, there's the big problem. With so many liars trying to deny the truth, it is difficult for people who know the facts to present them.
When I state a simple fact about how we cure autism, all sorts of people who have agendas butt in and try to tell people false information.
Curing autism should be as simple as putting stitches in a wound, no controversy. A. Thimerosal caused the autism. B. Chelation removes the mercury and aluminum.
Instead, we have liars everywhere trying to promote all sorts of crazy notions about other possible causes. People need to recognize the truth and tell everyone else to shut up.