What can parents do to help the cause of autism advocacy?

My recent posts, and your comments to them, has got me thinking about the following question:

Aside from being a good parent, advocating for our autistic children when they are young, and helping them learn how to advocate for themselves as they get older, what are some things that parents can do advocate for autistics in general?

I know what the basic message is, but what I’m not sure of is how best to get that message out; to friends, family, local media, educators, etc etc.

I’m going to be “off the grid” for the next 10 days, so I won’t respond to anything right away. But I’m looking forward to reading your ideas and suggestions.

0 thoughts on “What can parents do to help the cause of autism advocacy?

  1. On the contrary. Whilst you’re away for 10 days you can use your big brain to come up with some ideas to share with us lesser mortals!
    Cheers

  2. I just happened upon your blog and your question and have to say first off all kudos that you want to help other parents and get the message across the board on autism. It’s so important for people to understand what autism is, that each child is unique.

    Blogging and linking with other bloggers is one sure way to get your message across.

    My co-writer and I are in the beginning stages right now of our book and we’ve put the call to autistic adults, parents, and teachers to send us their personal stories. This is one way we can help get the meaning of ‘autism’ to the world.

    If you’re interested in linking up to us feel free to drop me a line or check out our site.

    Once again, kudos to you and your blog and I wish you success.

    http://www.theautismepidemic.com

  3. A few random thoughts:

    1) Speak up when you see intolerance and discrimination towards others around you, no matter the reason.

    2) Educate people around you. A few words here and there repeated often may spread farther than you would think.

    3) Write letters and make phone calls (to lawmakers, media, etc.) when there are issues that need people to speak up.

    4) Support groups that support those with disabilities (and don’t support those that only say they do, but treat them like second class citizens).

    5) If it’s in you, give talks to various groups. Offer to talk to community groups, educators, etc.

    I’ll let others add other ideas.

    Joe

  4. 1) Speak up when you see intolerance and discrimination towards others around you, no matter the reason.

    I’d echo that one.

    Remember that if you’re not (or not seen to be) of whatever category (real or imaginary) of person is being targeted, you have more credibility in most people’s eyes than they do.

    Because if they stand up for themselves, people often call it selfish and self-serving — after all, they’re being targeted and they’re fighting back, for themselves, “obviously”.

    An ugly fact that they’re seen that way, but too often true. A person who doesn’t have (or doesn’t appear to have) whatever quality is being singled out, won’t be seen that way. (Although they might be seen other negative ways, they still have more chance of getting the point across sometimes.)

    Another one, related: Make it more possible for us to stand up for ourselves.

    As in, make an effort to make it outright welcoming where we’d normally expect to be told to shut up. Be aware the risks we take in doing so (some of which are major threats, others of which are like Cal Montgomery calls little acts of degradation, which add up like straws on a camel’s back and make it hard for us to put ourselves out there only to experience yet another reminder that we’re Not Welcome with capital letters, but that in themselves are so seemingly tiny that people blow us off if we bring them up — read Cal’s two articles on “Project Cleigh” to find lots of examples), and find ways to minimize those risks.

    Er, and Cal’s two articles are this one and this one.

  5. A couple quotation from those articles, for people who don’t click through the links (everything past here is a quote):

    Every few hours I run up against people who feel free to remind me that I’m their inferior and that I should conform to whatever they’ve decided “people like [me]” are supposed to be like. Every few hours I run up against people who are so convinced that this is true that they are mystified that I’m not grateful for the experience. Every few hours I run up against prejudice that now affects not only me but my dog. Every few hours.

    […]

    Considered one by one in isolation, the little acts of degradation seem very small indeed. Nondisabled people, when they get called on what they’re doing, see them as isolated incidents, as unintentional (and I’ll grant that a lot of the time, they are unthinking rather than deliberate), as insignificant, and therefore as unimportant. They wonder why we get so upset over something so little.

    […]

    For those of us who encounter these incidents over and over and over, they aren’t isolated. They’re a pattern. They’re a pattern perpetuated (often unthinkingly, but unthinking does not necessarily mean okay) by people who see the little reminders that we are not as good as regular folks as entirely normal. Entirely natural. Entirely justified. And they’re a pattern that has a tremendous effect on our lives.

    Like members of other groups who face regular reminders that they have their places and should stay in them, our attempts to convey to other people what the problem is seem to them like weird acts of discrimination against them, because we are trying to deny them their right to degrade us over and over again. “I didn’t mean it that way,” they say, or “You have to understand.”

    […]

    I recall a conversation I had with Carol Cleigh years ago about people who are “homebound.” Being “homebound,” Carol told me, isn’t necessarily about being unable to leave one’s home. Many people stay at home not because they can’t get up and out, but because they just don’t want to go out and face the way the world grinds them down.

  6. I’ve been reading with fascination at everyone’s posts and have to say that it’s a sad world we live in when we are judged by what we wear, what we drive, where we live.

    My children were brought up not materialistic and to show compassion to others who are ‘different’. If only the world (who do not understand fully what it means to be autistic ) can really observe these children then they would see they are not any different from us. They may only communicate their messages in a unique way socially.

    I’m sorry for the soap box but if I have to hear one more friend tell me that autism comes from mothers who spoil their kids I think I’m going to scream.

    Yes, highly functional autistic children will take advantage of a parent who is lax in their discipline, but to state that autism comes from ‘spoiling their kids rotten’ is where I draw the line. For that reason my co-writer and I felt the need to educate and bring more awareness to autism.

  7. The best advice I have is for all parents and carers to “stick together” instead of facing off against one another or competing !

    IN OZ for years I would devote time to support parents new to the diagnosis at forums and message boards . I no longer bother because it always turns into ww3 here with parents too busy competing with each other and arguing over whats right and whats not – it leaves you feeling worse than ever !
    Its so sad because for the most part we are isolated enough as it is and then the people you think you could relate to the most and bond with turn out to be worst than total strangers who are NT and have no real idea what Autism is !
    We dont need more enemies we need more friends and support for goodness sake !

    So my advice is simple – stick together for heavens sake !
    – whether we are black , white , rich or poor , have a uni degree or left school early – get over all that and just concentrate on supporting each other and our kids .

    I envy Americans who I OFTEN see at rallies in support of Autism or to demand better services etc ……………………… if only in Australia !!!!!!!!!

  8. I have to agree with “On my own”.

    One united and very loud voice just might remove the ear wax from some of the bureaucrats to begin listening to parents that more funding is needed, more resources, and to eliminate this long waiting list.

    “On my own”-if you can email me I would love to find out for a book I am cowriting with a friend on what services there are in Australia.

    autismepidemic@yahoo.com

    Thank you for any help you can offer. If anyone is willing to help us out please check our website:
    http://www.theautismepidemic.com

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