Autism Advocates
First, another looks at Webster’s definition: A person who writes or speaks about a cause.
That’s me. But there are other kinds of advocates out there, both good and bad. On the internet, the differences get blurred. Hopefully, this article will help define the lines. So what kinds of advocacy are there? Here’s a list:
Individual: for the rights of a single person
Self: for the rights of yourself
System/Political: to promote changes in a broader system or promote a broader cause that affects a greater number of people
Legal: legal rights of various degrees (this can branch to the others easily, but issues will require someone with legal training)
Legislative: for changing laws which can branch to system political at times.
So, you’ve got problems. You’re child, who needs and IEP is having trouble in school and it seems the school will not listen to you. You may need an advocate. Like many people nowadays, you turn to the internet and you find someone who says he can help. He says he can force the school system to play straight. Sounds great. Then he asks for money for airfare to come and visit your child’s school. He plays on your desperation and you give in. You send the money and he never shows. Either that, or he actually contacts the school and ticks them off so badly they’ll never work with you. So how do you know if you have found an advocate who can help you?
This is something I’ve actually helped people do several times over. My form of advocacy is in education. I believe that the more we learn, the better off we are. I advocate for people to learn about conditions to help erase stigma and abuse. So I give lots of advice for people looking for help.
What to watch out for on the internet with advocates:
Asking for money. Depending on the kind of advocate you are looking for, you shouldn’t be looking to connect with them on the internet. Any advocate who’s asking for your money, you need to look at closely. As in my last blog post, ask questions. Often they’ll make wild claims of what they can do and what degrees they have. If they can’t be verified, run. If you ask and they get belligerent, run. Verify all information. Let me write that again, verify ALL information before giving any money to anyone for their “advocacy”.
Now let me tell you what an advocate is not and shouldn’t be. An advocate is not some special authority who goes around demanding answers of individuals or other advocates for every detail of their doings and lives. They are here to help people, not police them. When Nick Dubin, a well known advocate for autism, was arrested; I was contacted and asked why I wasn’t demanding answers and writing blogs about Nick Dubin. Simple, because that’s not what an advocate does. I’m not trying to write the National Enquirer of Autism here (some people are and do). I’m not writing the gossip column of autism either. That’s not what an advocate does. That’s not an advocate, period. Now, there are plenty of advocate blogs out there and some of them are indeed doing just that, some aren’t. You have to judge for yourself, what kind of information you are looking for. But I challenge you, look up definitions for yourself of “advocate” and see how many times you see “vigilante” or “gossip columnist” in the description. You won’t.
Now, what’s the best way for you to find help for your child? Every place and state has lay advocates of some kind somewhere. You just have to know where to look for them. Here are some updated ideas:
-Look in your phone book or online for your states Ombudsman’s offices. Call them, they can often give you solid advice of where to go if they can’t help you themselves.
-Contact your state’s chapter of the Autism Society. You can google it by “state name” Autism society, try it. They often have lots of links with people and groups you can call.
-Google for your state and a chapter of NAMI (National Alliance for Mental Illness) and contact them.
-Contact your states or county school board and request a hearing for your child. Most times, this costs nothing and it’s part of your rights for your child.
-you cold google School Advocate and your area, town, county, or state and see what you get, but remember the above.
Just a few ideas. Do you want to be an advocate? In my next writing, I’ll tell you the do’s and don’ts from personal experience and more.
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