Volunteering For Autism Organizations
6 mins read

Volunteering For Autism Organizations

I didn’t volunteer at all when my son was first diagnosed. For two years, I focused on him, learning about autism and what his needs were in terms of services. I wanted him “fixed“ and relatively quickly.

I had to learn about this term, “autism,“ why it applied to my son, and what I was really supposed to do. I had to slow down, help him, and learn.  

After two years, I finally began to feel comfortable enough to go out into the world and talk about my son with autism. I felt I had finally gained the skills to have a reasonable conversation.

I volunteered for AIDS organizations in the 90?s so, it was not a great leap for me to begin to volunteer in the autism world.

What did I do?

I did a little research and discovered a pretty well-established group called Autism Speaks. I called and set up a meeting with an AS representative. Turns out, the representative didn?t live far from me so we agreed to meet at a café in a neighboring town.

I liked this person immediately. I felt comfortable talking to him and liked what he said about his organization. I signed up to help with their upcoming autism walk.

That was eight years ago.

Do you still volunteer for the same organization?

I do.

Last April, I worked as a volunteer on my seventh Autism Speaks walk.

I keep volunteering for this organization because I like the people I work with and I like what Autism Speaks is about. Their mission statement is clear and their beliefs generally coincide with mine.  

Autism Speaks is a large organization. They have a good reputation, but there are some naysayers.

Here?s what I tell those people:

*Almost all of the people I worked with over the years had someone in their lives on the autism spectrum. They know someone, which adds a personal level to their experience. And, this makes them just like me.

*I have seen, perhaps hundreds of times now, information go directly into the hands of families. This happens at conferences, walks, and other events. They are pro-active when it comes to autism awareness.

*I have had strangers approach me and ask about one of my “Walk Now for Autism Speaks“ t-shirts (I have about 20). We talk and share information and a connection is made.

*My son has received direct services as a result of an Autism Speaks program.

*I have had wonderful experiences because of this one organization.

*I get to volunteer at autism conferences two or three times a year. It gets me to conferences so I can hear about the latest autism information.

*I get to attend a “high end“ event, at least, once a year.

*This year, my son was able to go onto the field at a Dodger game thanks to Autism Speaks.

All of these things (and more) came about because of my association with one organization.

Has there been any negatives?

Yes, there has been. I have seen some people leave the organization that perhaps left in a negative way. Since I am “just“ a volunteer, these decisions were a part of the business end of this organization. I had no voice in decision-making. Nor should I.

I do recognize that AS is a business. Decisions were made by employees and by upper level management to help move the business forward. Like any company, not all decisions are well-received or profitable.

Plus, I may not have personally agreed with all of them. I hate to see anyone lose their job, for example.

However, I do understand that my voice in those decisions is very limited. There was only one time, post decision, when I considered severing ties.

Why didn’t I?

I do have my own agenda. I have my own personal mission. Autism Speaks does help me with my mission to allow me a platform to meet people and spread my message.

I had to either walk away or accept that changes sometimes happen. I had to look deep into myself and decide if I can still be a part of serving our community in conjunction with this organization.

And, I can.

There is still a lot of good to be had with this organization. I still feel connected to them. I still believe in them. I didn’t become a naysayer because I was able to eventually remember that there?s a bigger picture in play. For me personally.

Should I switch organizations every few years or stay with just one?

That choice is totally up to you, just like the choice to volunteer.

I almost changed my affiliation. I thought long and hard and finally decided I wanted to stay. Other people walked away. It?s a personal choice.

I know there are other organizations out there who would welcome my energy and experience. I can always change if I feel I need it. And, so can you.

Just remember, if you have a personal message you?re trying to get out there, and it aligns with an organization—or if you want to begin your own organization—then follow your heart. You?re out there, presumably, because of someone you love. What better reason is there to find an organization that works with you, and then stay with them as long as possible.

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