Do #Autism Organizations really help #autistic people and their families?

As Lost and Tired becomes more and more popular both inside and outside of the community, I am sometimes asked to support a non-profit #Autism Organization.

To be completely honest, I almost never align myself with any organization. It’s not because I’m a loner or don’t play well with others.  It’s because I have yet to really find an organization that I have personal knowledge of that actually makes a difference in the day to day lives of autistic persons and/or their families. 

This has been sort of a pet peeve of mine for awhile. 

I’m certainly not saying that these #Autism organizations don’t help the cause.  It just seems like sometimes they become too big for their own good. When this happens, it feels like to me, their message gets lost and they become largely ineffective.

This isn’t directed at any #Autism organization in particular and I’ve not necessarily had a negative experience with any either. 

The problem is, at least in my opinion, there isn’t enough being done to help families struggling with autism in real life. I always hear about these giant fund raising walks or events but where does that money really go, and how much money was spent in the process? How many real life families benefited from these efforts?

I know of so many families, good families, that are struggling with autism in their lives. Maybe they can’t afford therapies or are having problems with finding  education for their autistic children. Where is the help for these people?

I realize that there is always a greater good.  You have to focus limited resources where they can be the most beneficial.

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I will only ever partner or align myself and this site with an organization that I truly believe actually benefits real life people.  I can’t in good conscience recommend something to someone that I wouldn’t recommend to my own family.

Take the organization, Community Betterment. I have first hand experience with their work. The idea behind their organization is to help real life people, in real life ways. They are not as well known as some bigger organizations and they are not focused on autism.  They are however, a good example of what these #Autism organizations should be doing, at least in my opinion.

I encourage you to check out their site at the link above and look for information on local chapters.

They seem to target the people that fall through the cracks. They help in smaller ways but in ways that profoundly improves the lives of those they touch. 

How many #Autism organizations can say that and still sleep at night?

What has your experience with #Autism organizations been? I would love to get some real life feed back from real life people. If you have been assisted or helped by an #Autism organization I would love to hear about it.

Your experience doesn’t have to be good or bad.  I just want to get a better understanding of how these organizations are helping or not helping the people of the autism community.

This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos. I know how to spell but auto-correct hates me.  😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.


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Jerri

I have worked for several organizations that do help families with children diagnosed with autism. I think with the amount of awareness now about autism in general that there will be more programs. I think that there isn’t enough help for some families may not be able to get this type of help. I am a psychotherapist and I always felt like programs needed to offer both types of therapy to families with autism. Why do I say this? Because I have worked with many families and children that have other mental health issues on top of the autism and not only that but coping strategies break down. So I guess where I live people are lucky because many of us work with children and families with autism and get them the help they need.
 
Jerri

lostandtired

@Jerri I think you raised a good point. It really depends on where you live.

ShanEda

I’m sorry, I have not been touched by an Autism Non-profit Organisation in any way.My family’s experience was that there were not services.  10 years wasted looking/searching for help, we got a diagnosis for both my children and some therapy group time that I had to find the money for because we didn’t qualify for help through my Provincial Health service.  I could not afford to continue for a second year.I’d love to see more of the ‘walk’ money on the front lines.  Neither I, nor my children, want to be cured.  We want to be supported.

lostandtired

@ShanEda your frustration comes through very clear. What in particular could be done better. 🙂

Jean Logan

My friend Christopher, a bright 14 year old autistic boy. For years I have had a vision of a large building on the land across the road. In this vision I saw children, laughing, playing and running. I knew I was here to create this but I wondered, who are these children and what are they here for. Christopher has given me the answer. I know now that this is to be a center for special needs children, to help them heal, find acceptance and their purpose. A few short years ago the ownership of this land by the nonprofit Holy Ground Farm, became a reality. I have been working with remote empowered symbols to help Chris and the improvement is slight, but there IS improvement. I am sure that these children can be helped. One thing they need is a completely organic diet free from any additives and sugar and plenty of green organic vegetables. They also need fermented vegetables or probiotics. A positive gut flora is essential.

lostandtired

@Jean Logan okay… Off topic…but okay. At least I know that comments are working 🙂

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