I have a great many friends in the #Autism community, both with and without #Autism. I look at everyone as one big extended family.
Sadly, I know that not everyone is treated well. There seems to be a lot of judgements being made about people within the community, by others within the community. I was hoping we could start to address some of these issues so that we can continue on with our mission of helping make the world more #Autism aware.
I wanted to use today and sorta take the pulse of the #Autism community. I want to know how you think the #Autism community is doing to raise awareness and support those touched by #Autism?
Below are a few questions to get the conversation started.
1) Have you found the community to be supportive to everyone within the community, regardless of whether they have #Autism or not?
2) Do you find the community to be united by our commonality or divided by our differences?
3) What do you think the community could do better?
4) Do you feel the large #Autism related organizations are doing to help those touched by #Autism and their families?
5) What has your overall experience with the #Autism community been?
6) What do you think the #Autism community is doing right?
This will be a tactful, honest and insightful discussion. Please treatment everyone with respect.
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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I'm glad that I found this site! As a person who is "self-diagnosed" on the spectrum, though I have a daughter with the diagnosis, I know much of this is self-generated but I don't feel totally at home in the Autism community. I think that having my scheduled evaluation done at a university's autism/neurodevelopmental disabilities center will greatly help with this. I know that some are not supporting my Change.org petition seriously or supporting it because they have issues with a "self-diagnosed" person speaking for the autism community. But I do have a daughter with the dx and she is doing very well now. Our family leans to the "cure" mentality where they think you can "snap out of" autism and they DO NOT LIKE IT that I am fighting for the chance to get checked out for it. My husband and I would take part in walks for Autism Speaks but that was when our daughter was dxed early and I was not aware of the vaccine controversy my autism awareness was brand-new. My husband is currently seeking a new position through a local autism nonprofit. I value all the awareness and openness that is out there today and the honesty on the part of ASD people even though we (and yes even I without a dx) are misunderstood too often as rude, strange, not having empathy, and the link. How can we do better? We need to bear in mind that (as in poltics, religion or anything else), people have deeply help beliefs about the causes of autism but that we can and should be united about helping ASD people, adults AND children, now. That is what I am seeking to do with my Change.org petition but I know there are a number of those in the Autism Community who see my petition as political, agenda-driven, etc. THis is hurtful to me because that is the last thing I want to happen.
1) Have you found the community to be supportive to everyone within the community, regardless of whether they have #Autism or not?
No, I do not find the community to be supportive of everyone. What I see are great divisions. For instance, parents of children with autism sometimes get defensive and attack adults with autism, seemingly forgetting that one day their child will be an adult with autism and they wouldn't want their child treated the way they treat us. Sometimes adults with autism give parents of autistic children a hard time for "not getting it". Of course, if the parent in question does not have autism themselves, they're not going to "get it" from our perspective. That's why we have to remain calm and rational and explain "it" to them. Whatever "it" is in the discussion at the time. Not saying it's easy but it needs to be done. Then you have the divide between anti-vaxxers/pro-vaxxers and those of us in between "okay to vaxx but know your risks"… etc. I'm not a Wakefield supporter but I'm often accused of it because I'm not willing to say I disagree with the thought that vaccines cause autism. There are INDIRECT ways that happens ( i.e. vaccine injury related paths). And while Wakefield's study was debunked, that does not mean it was RULED OUT. There's a difference. They can't prove a link; but they can't disprove a link either. So.. yeah, I'm willing to keep an open mind for discourse purposes until someone says "Hey, we found ALL the causes of autism and these are they"… and really, cause isn't that important to me. I"m not interested in being cured or preventing future generations of autistic children. Those are just TWO divisions within the community. There are many more. It's a mine field.
2) Do you find the community to be united by our commonality or divided by our differences?See answer to #1.
3) What do you think the community could do better?Try to keep emotion and personalization out of discussion.
4) Do you feel the large #Autism related organizations are doing to help those touched by #Autism and their families?I'm autistic and never received help from ANY organization. I don't know whether or not ANY organization actually DOES help anyone–but they help with RESEARCH that is designed to make us extinct. EXCEPTION: Kennedy Krieger Institute. Their archived articles are a wealth of information and their research covers a wide range of things, not just eugentic-based designs 🙂
5) What has your overall experience with the #Autism community been?I'm less involved with the "online' portion of it than I was at the beginning. I feel like a victim sometimes of an abusive relationship. I had to leave the situation.
6) What do you think the #Autism community is doing right?They're talking. They're discussing things. They're getting things out in the open.
Sadly, I'm entirely isolated in my own corner of rural America. We don't even have a Publix grocery store to carry my daughter's GFCF foods, let alone therapies and support groups. This makes me an outsider-looking-in on the autism community as a whole.
Unfortunately, this go-it-alone history of mine has jaded me. I don't have the time or energy for the latest buzzwords in autism or the most politically correct attitudes, and times that I do find myself in the company of another member of this autism world, I usually get my head bitten off for something irreverent that I've said or done.
I love my daughter fiercely, but watching her grow up without any kind of recognition or support in our community has made me work diligently to "fix" her. something that I know is actually offensive to some people within the community. Yes, I understand where those people are coming from, but I'm facing a future in which my daughter is the only autistic person around…she needs to learn to adapt to all of the social rules that are in place when there is no one else like you around.
autismfather @lostandtired katrinamoody What are your thoughts?
1) Have you found the community to be supportive to everyone within the community, regardless of whether they have #Autism or not?
Most, but not all. There are some who hate autism and everything to do with it and simply refuse to believe there could be anything good about it. All of the people I've met with that attitude are neurotypical parents of autistic kids.
2) Do you find the community to be united by our commonality or divided by our differences?
Mostly united.
3) What do you think the community could do better?
Reach out to the general public about autism awareness. Currently, we pass our messages around this autism community and most of the people we reach already agree with us or already know quite a bit about autism.
4) Do you feel the large #Autism related organizations are doing to help those touched by #Autism and their families?
I don't think the organizations do that much to help. ASAN might be an exception. Autism is a social, economic, environmental and political issue and all of those areas need to be addressed. Most organizations focus more on collecting money.
5) What has your overall experience with the #Autism community been?
Mostly very accepting and supportive.
6) What do you think the #Autism community is doing right?
Growing, and bringing in more members every day.
Great feedback. Thank you for sharing.
@lostandtired
I can't figure out how to get paragraph breaks into my comments. Do I have to hit return twice? or something?