Posts in category: » Advocacy

Hodge Podge #1

Written in 10-3-2010 by Melody | No Comments

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.

Explaining. Perception.

Written in 6-2-2010 by Melody | 3 Comments

Today, I came across a casualty of ‘Autism is evil.’ campaigns. My oldest, who is more affected by Autism, was invited to a birthday party of his classmates. It’s a huge step forward that parents and kids alike are able to invite him knowing his differences. He even was withdrawn, sprawling and very noticeably upset within 5 minutes of coming in, but my little guy just wanted to stay. We stayed.

Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

Support Groups, Meetups, and Social Gatherings

Written in 29-1-2010 by Melody | 2 Comments

Last night, I decided to go to an Asperger’s support group. It’s for both adults with and parents of. I was 5 minutes late because we had quite the rain last night, as such, traffic was bad coming home after picking my husband up from work. But I went nonetheless.

I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.

‘Bettering’ Ourselves, Helping Others

Written in 13-1-2010 by Melody | One Comment

I love being a mother, a wife, and all those things entail. There is also a part of me that says I could be doing ‘more.’ I do this site to give back to a community I see as needing some camaraderie. I’m sure there are some of my visitors who feel the same way.

What are some ways we can better ourselves and give back a little? I think a really big step for those that belong to our specific community is to find a way to bridge a gap. There is a gap between Non-Parent Self-Advocates (ASD non-parent adults), Parent Self- & Child-Advocates (ASD parents of ASD children), and Parent Child-Advocates (NT parents of ASD children).

I don’t see the two outer groups at being so different in what they want. But the message gets to messed up. ASD adults do want all of us to be accepted. Acceptance is only a piece of it. Accommodations and intervention are still key for maximum independence. NT parents want the kids to be happy and healthy. There are many who see their kids as damaged, yes. But in reality, they just haven’t been shown that their kids can get past that sometimes. Other times, the parents don’t have the support needed to help their children and are scared for their futures.

For those of us who are ASD parents of ASD children, we know how well our kids can do. At some point, we had to meet someone to become a parent. We know we were able to hold a relationship at least at one point. Some of us never had those early interventions and see some after effects of it such as mental health issues. So we can see what could have been done with ourselves and we try to do those for our children. Yes, there are sometimes that we will not be able to help our children be completely independent. But we have sometimes seen the abuse that can happen having experienced it ourselves. We know how to safe guard our children even if we have to lobby for it.

I hope that by the time my kids are my age, there will be a system in place to let ASD adults live on their own with accommodations. And I think if we bridge the gap between NT parents and ASD adults, we can get things to help all of us. Those dealing with the issues now, and our children that will deal with them in the future.

Ari Ne’eman nominated for National Council on Disability

Written in 21-12-2009 by Melody | One Comment

FOR IMMEDIATE RELEASE

December 16, 2009

President Obama Announces More Key Administration Posts

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

*         Jonathan M. Young, Chair, National Council on Disability

*         Carol Jean Reynolds, Member, National Council on Disability

*         Fernando Torres-Gil, Member, National Council on Disability

*         Chester Alonzo Finn, Member, National Council on Disability

*         Gary Blumenthal, Member, National Council on Disability

*         Sara Gelser, Member, National Council on Disability

*         Ari Ne’eman, Member, National Council on Disability

*         Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

I want to first congratulate everyone who is being nominated.  I’m sure you’ll represent your communities well, and our nation well.

Ari Ne’eman, Nominee for Member, National Council on Disability

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions.  He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services.  He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion.  Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he  studies political science and expects to graduate in May 2010.  In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

My extra congratulations go out to Ari Ne’eman. I first got to know Ari earlier this year. He is a tender voice for our community, but also quite outspoken. I think his ideals with regard to where national policy is with respect to the Autistic community at large are spot on.  In my honest, and humble opinion, he more than deserves this spot. I’m sure there is a bright political career in front of Ari.

You can read some of what Ari has done above, and there is even more at ASANs website, link on the left column.  Today though, for those that live in the United States, I’d like you all to take the time to email your Senators on behalf of Ari.  The following is what I have sent to my two US Senators.

I’d like to encourage you to confirm President Obama’s nomination of Ari Ne’eman to the National Council on Disability. I am a 27 yr old mother who has been diagnosed with Asperger’s Syndrome. As well, I have two small children ages 4 and 5 who also have Autism Spectrum Disorders.

I have grown to know Mr. Ne’eman over this past year and find his character to be quite sound. He truly has the best interest of all people with Autism Spectrum Disorders, adults and children alike. He would be a valuable resource for all in this position.

Thank you very much for your time. I hope we can count on you to confirm this position.

Sincerely,

Melody Latimer

Obviously, mine is a little more personalized as I have enjoyed the company of Ari and the other ASAN leaders via their listserv, but Ari truly is one of the ‘good guys’ in the Autism spotlight. Feel free to comment or email me privately if you’d like to know more about Ari’s record or ASAN.

After the Firestorm

Written in 4-10-2009 by Melody | No Comments

Amongst the controversy from this past week (RE: “I am Autism.”), a very intriguing, but startling question was posed. “What will happen when [/if] Autism Speaks folds?”

I don’t expect them to fold. I think they will survive with the parents that cling to them now. But I think they will damage a lot of their credibility along the way. What will happen after that? Some parents that I’ve come in contact with say, “Well, if you don’t like them, donate your money else where.” or spout something about how no one else is bringing awareness.

I posted earlier this week about I am Autism dot ORG. We have been discussing what we can do to really help get it started. Suggestions have rolled around about needing a parents section. Not AS parents, but parents of ASD kids. Something that has meaningful resources for parents with a friendly Neurodiversity atmosphere. I’ve said I would be happy to help contribute. This is one way to help bridge the gap.

I’d like to see a lot more than just this happening though. Where can families put their money? ASAN is a worthwhile place that I like to support when at all possible, but I must admit, I do not see a lot of NT parents donating. Autism Society of America has been a decent place to turn, but the more Autism Speaks reaches, the more it seems ASA associates with the same mentality. Don’t even get me started on National Autism Association or The Autism Science Foundation with their  for that matter.

My biggest want out of all of this is to see more assistance go to AASPIRE along with bolstering an advocacy group such as ASAN. There are a lot of ways to do this, but I think for all involved, it is a worthwhile initiative. My greatest hope is that we will be able to reach and help families with Autism.

“I am Autism.”

Written in 29-9-2009 by Melody | No Comments

More like, “I’m what happens when you cannot accept Autism.”

Warning: If you have not seen this video posted else where, it is very hurtful to those of us on the Spectrum. My husband even asked me to stop playing it in his presence after 20 seconds. If you have children with Autism, please make sure they are no where near until you have watched it for yourself.

Autism Speaks | “I am Autism.” PSA

Many parents seem to defend the practices of this film because it “brings awareness” and “no one else” is doing anything. One parent went so far to say, “You need to do SOMETHING, even if it’s WRONG.” Of course, this goes against my logic. Not to mention goes by another old adage, “If you can’t say something nice, don’t say anything at all.” But don’t worry, we’re the ones with no empathy.

I have tried to think of a way to quantify my exact feelings from this video. I would never let my kids see this video. I would never want ANY Autistic child to see this video. No matter the gifts that come from Autism, they are overshadowed by this view point. We are not a burden if we are accepted. We won’t be accepted without awareness, but it must be positive awareness. Negative awareness only seeks to drive our chances of inclusion away.

Dan Marino Foundation | “No Myths” PSA

I much prefer this video for some obvious reasons and others not as much. It definitely paints us in a better light, but it does not hide the truth of our disability. It is very extensive in showing us as people who not only need acceptance, but also support. I think the second part is the critical issue here. Most people feel the Neurodiversity movement is asking for needs to be ignored. The support helps us gain greatest independence.

Some of my fellow self-advocates have set up a response: I am Autism.ORG It should grow more to include some valuable resources on positive Autistic outcomes.

Autistic Self Advocacy Network | Protest Autism Speaks “Walk Now for Autism”

Heart of the Matter

Written in 9-9-2009 by Melody | 2 Comments

King charles spaniel

Okay. That title seems a bit strange to me, but it really seems to describe how I feel today, this week.

My oldest, more affected, son started Kindergarten this school year. We’re in the middle of week #3 and I’m wondering how NT parents do this. And when I say ‘this’, I’m not talking about parenting, or raising a child with Autism, but how they deal with school personnel.

I’m happy to announce that I’ve joined both my boys’ schools’ PTAs. I’m even being named the VP chair of one committee for one school. I’ve done what I can to get awareness out about Autism, not only in my kids, but myself. I’ve started really pushing my therapy goals, especially those of not being stepped on. I’ve even gone to some Asperger’s adults’ Support Groups, though didn’t find them terribly fulfilling.

This week though, I’ve been thrown a curve ball. Despite all I’m doing to be involved, all my attempts at awareness, everything I’ve done for myself and my kids, my son is regressing. First two weeks of school, he had some issues with transitions. Not a big deal, we all expected it. He was assigned an aide even to help him with this. This week? His transitions have gotten much worse. He has been punished two days in a row by removal of his recess time. He’s been running away from his aide, teacher, and other personnel.

I’m doing what I can. I wanted to shadow him tomorrow, but that attempt is being thwarted by my own mother. I’m getting his IEP tomorrow so I can go over the specifics of it. I have told his SpEd teacher, who doesn’t have any control over the majority of his day, that we need to do a FBA (functional behavior assessment) so that they can put a BIP (behavior intervention plan) in place. Though, I don’t think she 100% agrees with me that this is needed. This is not the only thing that’s happened to him. He had a bad day last week too, where I was told I should send him with a water bottle because he “kept getting up to get a drink of water.” By the description, I knew he was perservating, not thirsty. I told his teacher, but she still insisted on the water bottle. They didn’t give him his Disney Cars school supplies either, which I told them they needed to as a re-inforcer.

I’ve done what I can to help him to the best of my ability. I’ve tried to be nice, and cordial, and help the school as well. Now I’m going to have to put a foot down because my son will not slip through the cracks. I refuse to let that happen. But how, I ask? How do NT parents do this and not crumble to pieces? When I know so much of what he’s going through? And have given them so much insight? And I do everything for awareness? How is this the end result? Or not the end result, but the beginning result?

This has been a heart breaking week. And we’re only at Wednesday. And we’re not even a month into school. And we are already fighting to help him just stay afloat. It’s a sad day, and the heart of the matter when it comes to all Autistic students. Disabled students. Disabled people. Acceptance, Awareness, and Accessibility.

When brains don’t work…

Written in 10-7-2009 by Melody | No Comments

Man trapped in giant maze

Or specifically, when my brain doesn’t work. I’ve never liked that phrase. My brother used it a lot growing up, “Uh…. My brain’s not working.” I knew what he meant as he and I had a lot of the same issues (though, he has had a harder time overcoming some than I have). But still, the phrase leaves me feeling, — I don’t know — ignorant? betrayed? I know the right word is there.

I work as much as I can to keep myself going and connected. For some reason though, the past couple of weeks, this has not happened. I’m not exactly sure what happened to cause my brain to finally shut off, but it did. I was distant with all of you who come here, with those on lists I usually frequent, with my friends and family, and worse of all my husband and children. I didn’t stop caring for them, I just had a hard time connecting.

I’m back and trying to jump start my brain. Diving in head first, so to speak. I’ve done this before, but I’ve never had a reason why this happens. Even now, I don’t think I have a solid one. Just that I finally couldn’t really handle interactions. This is not an apology or an excuse or even a reason. But I hope that some of you read this and realize you’re not alone when these things happen.

Upcoming this week, Future Horizons’ SuperConference where Tony Attwood, Temple Grandin, Jed Baker and Carol Kranowitz will be speaking. I will be going for several reasons. I do plan on updating periodically from the conference via my phone. I do plan on helping with ASAN’s efforts to confront Tony Attwood’s associations with FAAAS and their affiliates.

Parents with Asperger’s: Part 1 – Negative Stereotypes

Written in 27-6-2009 by Melody | No Comments

Mother and Child Embracing

I hate having to do this, but after searching and searching, I feel it is needed. I have had people ask me some worthwhile resources for parents on the spectrum. I’ve also been doing my best to find reliable sources to draw from to help build some concrete articles. Instead, what I’ve found is not only inaccurate, in many cases, down right brutal. Take an excerpt from an article in USAToday from 2007

Though professionals use the same diagnostic criteria, interpretations make for wide disparities in diagnosis. Ami Klin, head of the Yale Developmental Disabilities Clinic, says some people may have family members with autism-spectrum disorders and exhibit features of Asperger’s, such as “social deficits and a great deal of rigidities,” but these traits are not tantamount to the diagnosable condition.

Forming close friendships and dating run counter to Asperger’s adults’ goals, colleague Tsatsanis says; Klin says he has never known a parent with Asperger’s.

Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, concurs that an Asperger’s parent would be rare, and she knows of just one short-lived marriage. Recently she does more “un-diagnosing” than diagnosing, she says.

Most if not all have also heard of FAAAS and CADD (or the Cassandra Effect) that suggests that Asperger’s partners (and parents) deprive their partners of affection. As well, it is said we apparently seek out socialites in hopes of them being our mentor. [An aside. They should really meet my husband to see how he works into their frame work. He's hardly social!] Even Tony Attwood has in previous conferences suggested we are abusive, leave our children embarrassed or unloved, and that our children will hate us.

From my experience with my children, and the few Asperger’s parents I’ve met, this is in no way accurate. I’m sure there are people within our group that are this way, as there are neurotypical people who are also abusive and neglectful. To characterize us, in my humble opinion, as liars [USA Today], neglectful [FAAAS] and abusive [Attwood], is not only cold and heartless, but also cruel and hurtful.

(to be continued….)

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