11/01/2010

Supporting Autistics, Whoever They Are, Wherever They Are



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Many bloggers are writing about the whole going silent on facebook and twitter thing on November 1. As I make the rounds of blogs on the Special Needs Blog Hop, I've noted that I won't be. So many of my facebook and twitter friends are autistic. If we went silent on that day, would that not isolate them more? Bah.

Instead I say, go to the blogs by individuals on the spectrum and say hi. Read some entries. Learn what their lives are like. Our children will one day be autistic adults. We want to make sure our children have a good support system, well, let's be a good support system to the autistic adults who are in our midst now.

Updated to include our list of bloggers on the spectrum.

Bloggers on the spectrum:



Blogs By Folks on the Spectrum


15 comments:

Tammy said...

I'm with you. I think speaking out about autism, supporting each other, is what our children need.

kathleen said...

Thanks Kim! I'm doing the rounds..you know I am behind you one million percent!

Dani G said...

I think this is great! Yep, I'm blogging today, too...

Jen said...

Supporting this too, great to have all the links here:) Jen

jonathan said...

There's an old saying, Kim, shallow brooks are noisy.

kathleen said...

Hey Kim shallow brooks may be noisy-but they are much better than the sound of someone peeing in the wind..you know, once it hits them in the face and all they can do is complain? Doesn't really accomplish much does it?

KWombles said...

Jonathan, I've heard of that saying, but I honestly just don't see what that has to do with listening to autistic bloggers or with the bloggers themselves. I bet no one else gets the relevance, either. Are you calling people on the spectrum shallow? How utterly disappointing.

Truly, and I mean this with gut-wrenching seriousness, of all the things I've seen in conjunction with the controversy surrounding the shutdown/speak out day, your behavior is, while not at all surprising, perhaps the most disappointing.

You spend considerable time on your blog trying to share your story, your reality. Whether I agree with how you do it or not isn't relevant here. Whether I find you personally likable or not isn't either. On a day you could have shown, could have shared, did you? When folks came by to read your blog, to listen to you, what did they find? And why, why, why would you begrudge other autistic individuals their chance to speak up and be heard?

jonathan said...

@Kim, read my latest blog post and that should answer your questions. I speak for the silent majority, too impaired to blog and parents too busy trying to get a better life for their kids.

@kathleen, as far as pissing in the wind is concerned, you certainly ought to know.

kathleen said...

Jonathon-I most certainly do. See it all the time. This is an honest question-so bear with me..The area that you live in-what information can you share about services there. I know of a few families-one in particular who has young adult non verbal children. They worry about the future..they don't have a whole lot of money so a special needs trust is out of the question. What information can I relay to them about your state. Who do they talk to? They worry-as does probably every parent on the planet-what will happen to their children after they die. How will their children get the care that they need? Where can they go to talk to someone about this? This is a part of autism many don't discuss-Adult non verbal people who can not live on their own. Do you have any suggestions? If you are speaking for the silent majority-(I really don't understand that term) what are you offering in the way of getting help and services. I am a bit more knowledgeable for some states on the east coast-but could use info for the west coast. What are your suggestions-and where are you directing these people? I have started working with the state legislator in my state to get much needed services and supports-information..and have just barely started working with the autism society. There are many adults-and soon to be adults that are being disregarded.

jonathan said...

Kathleen, I live in California where we have the state regional centers that deal with autism and related disorders. The CDDS is a place to start, though i don't know specifically who to contact who is a specialist. Unfortunately, the state of California is in very bad shape financially and this all makes it harder.

UCLA also has a variety of autism related programs as well if these people live in Los Angeles or nearby. However, I am not optimistic about them having much to offer in terms of services or help.

There is also the autism society of america which might give them some suggestions, though they seem to have an ND bias as they endorsed Ne'eman's appointment to the NDIC and had Alex Plank as a keynote speaker at their last conference.

I do not believe there are any easy solutions or quick fixes. It is even worse for parents at the lower end of the socioeconomic scale as they don't have the resources to take care of their kids and social security disability is hard to get and I know as I have been trying to get it for 3 years now.

In short, there are no easy solutions or quick answers, which is why we need to try to find improved treatments and at some point a cure for autism. I hope that answers your question.

KWombles said...

Jonathan,

Thanks for providing links to resources in California. That was nice of you.

As to other things you've written: you say that you represent the silent majority, but I do not see where you advocate for them to have access to better services. Maybe you do that elsewhere and I've just missed that.

Instead, what I've seen is that you've spent a fair amount of your time attacking people you disagree with, which is certainly your right to do so, but that doesn't equate to speaking for the silent majority you claim to speak for.

You paint people who try to honor their children while helping them achieve their potential (like Kathleen, who is a mother of four children, some of whom are on the spectrum, and me, with three on the spectrum, one of whom is that silent majority)rather negatively. Hmmm. Rather curious.

We would agree there are no easy or quick answers. Kathleen and I both bust our asses to help our children. I spent my son's first eighteen years with him almost entirely around the clock (and when not me, my husband did). I was with him in the school system, and then when I pulled him, I homeschooled him. I've been his staunchest supporter and his advocate, and I will remain so until I am no longer on this earth.

You don't speak for my son, Jonathan. Ari doesn't, either. My husband and I work together with my son to help him find his own voice, to make decisions about his life, to help him achieve as much autonomy as he can. We do not speak over him or for him without his consent. We do our best to honor him and to help him reach his potential.

He will need assistance for the rest of his life; he cannot live on his own, pay his own bills, converse over the internet, write his own letters without assistance. And yet, I believe that he has a good life, that is happy, that he feels valued and of service. People need to feel needed. He helps at the day center and he volunteers at an animal shelter. He is a sweet young man who would, if he could digest this online autism community, find it distressing and disappointing. We've taught him and he sees each day at the center that supporting others matters.

I personally find the thought of individuals assuming they speak for an entire group offensive, regardless of their intentions.

I don't speak for anyone but myself; I don't pretend I represent other parents. When I invoke a we, I know from past conversations (or current ones) with Kathleen, that she and I are in agreement in that specific instance.

Choosing to attack individuals on the spectrum who were seeking to share their stories seems to me to be nothing about speaking about the silent majority.

As one of those mothers who for 18 years was fully immersed in caring for multiple children with significant issues, I can also state that you have not represented me or my opinions, needs, wants or experiences, either. Before my youngest entered the school system and my oldest finished homeschooling and began to attend the day center full-time, I was not on the web participating in blogging or networking; I was blissfully unaware of all of this. I was, quite frankly, too busy.

Perhaps the community would be much improved if people quit trying to speak for others and spoke only for themselves. And even better yet, if they took care when reading another's words to make sure they were really reading those words rather than placing their own bias over it.

I don't have to agree with you to wish that you have a good life and people to care about you, that you have access to the resources you need. I don't even have to like you personally to want all that for you. All people deserve that.

Sirenity said...

Here is a cheer to everyone that advocates for their loved ones, to those that spend their time looking for ways to accommodate the people that require it, to those that give praise where it is warranted, to persons who understand that suffering is not the whole picture of any story and to to all of those that love with their whole hearts.
I am amazed by how much our online community can pull together! Kudos!

kathleen said...

Thank you Jonathan..I will be sure to pass this along..And post it on our forum at RFID. Every bit of information helps. :)

Ali said...

I never did get around to blogging on Autistics Speak Day, but I do blog and I am autistic, if you wouldn't mind adding me to your list?

http://alternatelexicon.com - The Alternate Lexicon

KWombles said...

Thank you, Ali. I sure will.