I went out for a run this morning. 5 miles, 39 minutes on the nose. I went out with no particular plan, but I eventually found myself at the local high school track. While there, for no apparent reason, I decided to do a couple of Fartleks at 5 minutes a piece, averaging at about a 6:20 pace. The run itself really is nothing to write about; it is rather how my run started that has me sad.
For over the past year I have been using the Charity Miles App for almost every run I do outside.
It is ingrained into my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit go, run. For almost every single run over the past year and a half, this has been my routine, whether it be a training run, a fun run or a race.
The same thing, over and over.
Every run was inspired because I knew every extra mile was a little extra money going to Autism Speaks…every extra stride was money being spent on awareness…every step was improving the lives of autistics and their families…
With the family out on various errands and activities, I decided I needed to go for a run. I went through my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit g…
I stopped.
I thought of Suzanne Wright’s call to action.
I stared at my screen.
I thought of Suzanne broadly painting every family with autism as lost.
I sighed.
I thought of Suzanne making it clear that their focus was on children only.
My thumb hovered over the start button…wavering just so.
I thought of the countless autistic adults who are being left behind by Suzanne Wright’s call to action.
I sighed and looked away, hanging my head.
I thought of the fact that Brooke is only a handful of years away from being an adult.
Sadness overcame me as I realized I just couldn’t bring myself to pressing start.
I swiped through the other very worthy charities that Charity Miles has teamed up with. I finally settled on Achilles International, an inspiring group that helps disabled athletes compete in events like the New York City Marathon. Although I did not cry outwardly, I was doing so on the inside.
…feeling lost and sad after 5 miles…
I am sad.
Run Luau Run 
I understand your sadness (to the degree that I can, not being you ….). As this questioning on your part (and others) has progressed, I have been wondering about my own usage patterns……Autism Speaks is the only CM cause that benefits autism, and for my role in things, I think it is important to spread awareness. But that’s quite different from the valid concerns you have raised …. guess I’m going to have to figure it out as I go. (And ps I am sure Achilles is MIGHTY grateful to have your miles!) {hugs}
these children. OUR CHILDREN . will be adults in the blink of an eye. this makes me sad too.
I did the same thing, Luau, only it was somewhere around day 80 (early September) of my “Streak”. I did continue to 100 walking for Autism Streaks because I had made a committment to do that (yes, the committment was only to myself but it was a committment). Day 101 was odd and it was sad to feel that this organization had let me down. I know how you feel. Now I walk various charities – Special Olympics and MJFox. I know it feels better walking for an organization “closer to hime”. Maybe charity miles will pick up another organization that supports Autism. In the meantime, I’m sure any organization you choose will be happy to have you.
😥
We wipe away the tears with you….it is so sad….
I understand. Autism Speaks has a very narrow focus. Fortunately, autism is better known these days, and no doubt someone will create a charitable organisation that really “sees” autism for what it is – an extra set of challenges that can be minimised but never cured. And as much as Brooke has struggled, her struggles are lessening. The more she matures, the more self-aware she’ll be. And there’s plenty other auties and aspies to help her love herself xx
Thank you Jen. Your support is very meaningful to me.
Hey Luau, I’m a young adult with ASD and mitochondrial disease, which means, more or less, that every system in my body is a hot mess. It is progressive. There is no cure, not even a single treatment available. I don’t know if you’ve heard of the organization “I Run 4 Michael.” It pairs runners with “buddies” (usually children but can be adults) who cannot run. It’s informal and just about having fun, supporting one another, and encouraging each other. My runner is roughly my age, and she is full of fun. She dresses up for her races, and I help her pick what to wear. Right now, she’s working on running the 278 miles between her home and my nursing home, one evening at a time. I know how much you love running (by way of Jess), and I thought you might want to run “for” a buddy. – Lydia
I will definitely explore that avenue Lydia. Thank you!
Thank YOU! http://www.whoirun4.com/
Somehow I made it to your blog yesterday. A friend liked a post that I believe you wife shared on FB. Anyhow, I made it here. While my life isn’t directly impacted by Autism I know many who are so I read about your sadness. Then I read the comments. Then I went about my day.
I started running 7 weeks ago, and today was a run day for me. My third attempt at 25 minutes non stop. I’m happy to say I was successful, however I can’t say that I loved it. Or even really liked it much. I even passed a couple that made way for me to pass and exclaimed “I hate this!” In that moment I thought of your blog and Lydia’s reply. I thought here i am able to run, both mind and body, and I am resenting it. I thought I wonder if Luau’s daughter is able to run. How about the people I know on the spectrum, children or adults. I thought of Lydia and the joy she gets from her running partner. I thought “Wow is my perspective a mess.”
I came home and immediately signed up for a buddy. I also indicated that I would accept an adult match, because you are right, their struggles don’t end the day they turn 18. So I dedicate my new found motivation to you, your daughter, and her future. I thank Lydia for sharing her experience and introducing me to Irun4. And I am grateful for the sequence of events that brought me to your page and I look forward to my next run day where each step will be powered with a new perspective.
I’m sharing this story with you in hopes that you find a little comfort in knowing that something good came from this challenge you are faced with.
Angelica,
You just made my day! Thank you!
You did the right thing because Autism Speaks only gives back 3% of proceeds to support families. The majority of their fundraising goes to fund them and the huge salaries they pay many and families still go without needed supports. I applaud you for thinking about this and doing what hopefully many others will do the same. Autism Speaks has never really spoken for the autism community, they are in this to promote the “business” of autism for self gain.
Gotta say that Autism Speaks was the very first organization I came across after my son was diagnosed. I was grateful for that, but when I saw the breakdown of money distribution, I stopped supporting them. Many other worthy organizations out there. God bless, and I know whatever your decision, it will be thoughtful and the best one for you.
I completely get how you feel but I feel certain that you’re doing the right thing.
You also picked a great alternative charity.
Love you,
Mom
I’m really torn up about it too. It’s funny I didn’t read that she was only out for helping the children and not the adults. I looked at it as a way to get funds by stating the worst and having people think about the children. People don’t generally think about and feel bad for adults. They do feel bad for children. I hoped that in spite of what she wrote that there were plans for more support not only for the children but the adults with autism. They have made huge progress in getting insurance coverage for many (bringing about awareness of autism, though not accurate awareness) and there is still a long way to go. I don’t think their work is all bad. I think I feel I want to continue to support them (maybe not as much) but also to find other charities to support as well that will help my daughter’s future (i.e. the schools in the area, housing charities …). Sort of a not all eggs in one basket approach. It’s a hard decision and totally understand how you are feeling.
A measured and thoughtful response Julie. My love for AS always sprang from their awareness campaigns and the push to pass insurance coverage. It seems to me though that AS has essentially double downed on the idea of a cure and is pushing most of their funds in that direction. I do NOT begrudge a family that seeks a cure for autism. I was in that camp not so long ago. On a personal level I would not be surprised to discover year (decades?) from now that there is a small slice of the spectrum that could be in fact “treated” and “cured” – in the meantime however, there is so much more that needs to be done on a social level and with acceptance. Again, I don’t hold the scientific aspect of AS against them – instead it is their almost complete dismissal of employing and consulting those on the spectrum including the use of language on Suzanne’s part in her letter. These kids that they are calling burdens will grow up (sooner than later) and could face a world that simply sees them as such because of Suzanne’s policy. Are we really a society that wants to consider building a city of 500,000 to house autistic people? Ultimately, it feels like AS has become (and may have always been) a parent support group. Perhaps they should change their name to PoAS – Parents of Autism Speak. Anyway, please know that I will respect whatever decision you make and will always consider you my ally and friend.
The not really listening to those with Autism is a huge let down to me as well. It is so incredibly frustrating. You are my ally and friend as well. Hugs
What a bittersweet post. I’m sorry you were put in the situation to even have to make that call. Lots and lots of support to you.
thank you…it is a surreal place to find myself so soon after running the New York City Marathon in support of them and being the closing speaker at the team dinner the night before. Definitely feeling lost.
I’ve been finding myself coming back to your post over and over and over, and I couldn’t figure out what I really wanted to say. I guess I wanted to say that I am trying to understand how you feel (not an easy feat for an Aspie!). I guess it would feel much like losing a close friend – someone you thought totally “got” your child and family, because they always seem to have been on the same page… to suddenly find that they are not at all what you thought, and found out they are reading a totally different book altogether.
I wish there was more that I could say, because I think I understand why you’re so sad about it.
Jen,
You got it exactly right. Along with the sadness comes some anger and also a sense of emptiness…that sense of turning to share an inside joke with your former friend only to be reminded that he or she is no longer there…definitely hurts.
Wow I couldn’t have said it better. It’s a mourning process in a way. I would like to know what charities are out there that people with Autism would want us to support. Which ones are on the right page?
The groups that support families daily are TACA and the National Autism Association. Also look at how these organizations you donate too spend their funds via their annual 990s on Guidestar.
Autism Speaks has never returned more than 3-4% of their funds to support families. That is done mostly in their website and much of that information is obtained elsewhere.
You’ve made the right decision and I’d urge other donors to do so as well.
As a parent of a now 22 year old son who is being discriminated against due to the autism legislation passed in our state that Autism Speaks literally flew in folks to get passed, I would never support them again. We did at one time when they first formed hoping they would support families. That hope soon fell by the wayside.
TACA’s name stands for Talk About Curing Autism doesn’t it? Are they motivated by curing Autism?
Julie if you visit their website you will see what TACA does to assist. As with our son, many individuals have medical conditions that began with a vaccine injury that then led to a diagnosis of autism. What we have always done is to seek overall wellness for our son and that does involve seeking to cure those illnesses that promote some symptoms such as behavioral challenges and an inability to attend, self-injurious behavior, etc.
Our son at one time was diagnosed with severe autism after he regressed, lost speech, eye contact and was very ill on the day of his injury. We are promoting looking at the differing subtypes of autism to ensure appropriate care and intervention for each individual if desired. This is about choice and now that our son is a self-determined adult, he chooses to seek overall wellness himself via exercise to self-regulate, diet choices that are GFCF, and the use of supplements. He also is attending college and does not take any medication.
Autism presents itself differently in each individual and he personally does not identify himself as an autistic, as a matter of fact the diagnosis brought him much pain, segregation, abuse at the hands of educators, etc. so he does not identify with it. He does tell people he still has a little autism, but he doesn’t want it to identify who he is. That is his choice too. We’ve been active for choice options for all individuals living with disabilities and social justice for them which involves equal rights as well as access to appropriate health care.
I hope this answers your question.
Thank you,
Carolyn
Thanks for clarifying that for me. My daughters I believe were born with Autism as opposed to injury through vaccine. I do believe there is definitely a subset that has Autism as a result of vaccines. I’m not sure if the MMR worsened my oldest daughter’s Autism but I chose to split it up for my younger one. She is verbal and considered high functioning.
It would be great if you could submit this to http://thisisautismflashblog.blogspot.com/ 🙂
I believe my wife already did – if she hasn’t, I will do so. Thank you!
I just read no less than 7 articles about Suzanne, autism speaks and the call to action. My heart breaks for you and so many others. I have family members and very close friends who are deeply affected by autism. I can’t stand the way A.S. is handling all this. Adults, children, families- they all need the support equally.
A had a very close friend of the family pass away about a month ago unexpectedly. He was like a 2nd father to me, and he reminded me a lot of you, always doing what he could to support programs that benefited those with Autism. His son, who is like a brother to me- now lives in a single parent house with his mother who hasn’t worked since he was born because she needed to take care of him. Next year he turns 18, things are incredibly hard right now- and knowing that the largest Autism organization isn’t out there looking to help Autistic adults as well.. breaks my heart. I will do whatever I can, so if you find another charity or organization– let me know and count me in…I’m on your side.
[…] Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults. It’s her organization. She can do with it what she sees fit. Jess and I could no longer support them. It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me. […]
[…] broke my heart to give up on the possibility that they might finally see the light — the one illuminating […]
[…] broke my heart to give up on the possibility that they might finally see the light — the one illuminating the […]