Posts Tagged ‘Self-Advocacy’

‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response

February 3, 2012 37 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.

I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.

Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.

Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.

Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.

When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’  Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”

I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.

Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.

We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.

Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?

In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!

But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.

This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.

So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.

In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Putting Self Advocacy to Work

February 10, 2011 11 comments

This is a blog post by Kim Milla, BA, a Community Companion to an 18 year old young adult with autism.

Sometimes it’s easier to just do a task yourself or make a decision for someone else, especially for those who are unable to speak and act for themselves. However, I think it’s important not to take the easy way out. I think its better in the long run to have conversations with individuals and explain things to them, even if it doesn’t appear that they understand everything you are talking about. If you simplify your wording, rearrange sentences and words as needed, while maintaining a clear solid voice, you can often get your point across and increase their opportunity to be included in a choice.

To increase effective communication, take the time to find their strengths, and then use those strengths to uncover more about their wants and needs. An example of dialogue may be “rice and eggrolls for lunch? OK, so you’re feeling like eating Chinese food. Where would you like to go?” If this is where lack of communication enters the equation then you need to be creative and utilize that individual’s strengths to communicate with them. In a situation where the individual is really strong in directions, I’ve simply said “tell me where you want to go,” or “point me towards where you want to go.” I’ve used this technique before successfully. And sure enough we ended up in front of Wong’s Chinese Foods restaurant. The restaurant was 5 miles away in the next town, and it has the best eggrolls. Simple techniques like that can lead to great successes.

The key is to learn from the individual what will work and what won’t. Don’t let them get away with having you talk for them, button their buttons, tie their shoes, take the wrapper off, or pick out the bread in the supermarket. If you suspect that they can do something or make a choice, stand back and let them do it. I know this sounds simple but it is often overlooked. Let them do the things they can do on their own, and don’t pressure them, even if you think they can do more than they are doing. Sit back and observe them before commenting or jumping in to help. For example, send an individual to the counter to get a pizza box for the leftover pizza, and see how they do. Let them work it out with the server. And don’t impose your way of doing things onto them because you think your way is better, faster or more efficient. Even if your way IS more efficient, it takes away the opportunity for an individual to exercise their choice.

Let’s say you want to go to one more grocery store and you’ve already visited three stores and the individual is tired. If you tell them what you need, you’ll improve the odds of having a successful shopping trip. Validate them, and let them know you understand how they feel. Saying “I know you’re tired, I know we have gone to three stores and they were crowded. We have one more to go and I appreciate you being here with me,” clearly lets the person know you are taking their feelings into account, as well as exactly what you are asking of them.

In summary, remember, nobody (especially a young adult with autism) likes to be told what to do, when to do it, and how to do it. I think it’s also important to allow for and encourage exploration. Let them have a role in expanding their world. Give them choices and create opportunities for them to explore new situations. Be reasonable and understanding when you’re communicating.


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