Volunteer for Autism Organizations

What about being a volunteer for autism organizations

In the beginning

I didnʼt volunteer at all when my son was first diagnosed.

For two years, my husband and I focused on him. We had to learn about autism and what our son needs were in terms of services.

I think we wanted him “fixed“ and relatively quickly. Turns out, we learned about this term, “autism,“ why it applied to our son, and what we were really supposed to do.

We had to slow down, help him, and learn.

To learn about autism

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

I was a volunteer type of person, having volunteered for Aids organizations in the 90ʼs. So, it was not a great leap for me to begin to volunteer in some autism capacity.

What did I do?

I did a little research and discovered a pretty well-established group called Autism Speaks. My meeting with the AS representative went really well. The representative didnʼt live far from me so we agreed to meet at a café in a neighboring town.

I liked this person immediately and felt comfortable with him. He sold me on his organization and I signed up to help with an autism walk.

I volunteered for years

I volunteered with AS for years. Their organization is large with a good reputation. 

Still, there are some naysayers.

Hereʼs 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.

*Talking to strangers to share information is a satisfying connection.

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

*Wonderful experiences came my way because of this 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.

Volunteer only

Has there been any negatives?

I have seen some people leave the organization in a negative way. Since I am “just” a volunteer, I was not involved in 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.

I may not have personally agreed with all of them, especially because I hate to see anyone lose their job.

Why I really do it

My voice is very limited. There was only one time, post decision, when I considered severing ties with AS.

What happened?

I have my own personal mission, to meet people and spread my own message.

My decision centered on do I walk away or accept that changes sometimes happen. Do I want to continue to serve the autism community in conjunction with this organization?

Volunteer to help

There is still a lot of good to be had with this organization. I still feel connected to them and still believe in them.

I try to keep the bigger picture in play.

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, but I remained. There are other organizations out there who would welcome my energy and experience. I can always change if I feel I need it.

Just remember, if you have a personal message youʼre trying to get out there, and it aligns with an organization—or if you want to begin your own organization—then follow your heart. Youʼre 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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