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.

We are looking into starting a floortime/DIR approach with both of our boys. I have been thinking about it and feel this is the best way for our family. But as I look more into it, the more I realize the approach may be just as much for me as it is the boys.

As I think about it, I wonder how well this approach would work for ASD parents of NT kids as well. The fundamentals are getting down on the child’s level to get meaningful interaction. I’ve been told that this modality will be difficult for me because I inherently, through my Asperger’s, have a hard time with interaction. While I don’t agree that all people with Asperger’s have this problem, I do know my playskills are quite limited. I never did much typical play as a child.

Could this be a way to help an Autistic adult learn to give the interaction many children crave? I’m not talking about all adults, but those who want to learn, it seems like a viable outlet. I will think on this more, but wanted to put my musings out there.

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.

Source: NHS Information Centre

Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 percent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 percent.

This is the most important part of the information published. The implications of this study are far-reaching.  I’d like to look at a few of them in a bit of detail.  Subjects such as services, vaccinations, genetics and sociology come to mind. I hate to start with the subject of vaccinations and biomedical theories, but it is a very important subject matter.

I have faced many parents who have adamantly said I must not have Autism for one, and for two that their children are suffering from toxicity. I’m sure others have as well. This study clearly shows that the rate is the same across the board. Since vaccinations have only recently (past 20 years) been so widely used, there should be an increase in the rate.

I must say though, that the vaccine implications pale in comparison to needed services. This shows we are not getting much support, at least in the UK, and I believe not in the US either. We need more support to get it through college, as the amount of education is low. We need support in relationships, or else, the rate of being single wouldn’t be so low. Job placement assistance, financial planning, so on so forth. I read somewhere after this, “If the rate is so high, then why do they continue to live?” Basically using survival of the fittest and natural selection as a means to try to explain how there is still a high rate of autism. The fact remains that we are, for lack of a better term, mating and reproducing. I’d much rather a world where my kids can get assistance, if they need it, than to live alone, with no education, and a low paying job.

Which brings me to the sociology of all this. If there is such a high rate of adults who have the most part went undiagnosed, what does that mean of our impact on society? Are we being accepted or cornered into a homes? Is there adequate means to promote social awareness for not just the children, but adults as well? Social awareness should really be a two way street. We have all adapted quite a bit over our life times to be where we’re at today. I would like to see more socially aware peers. I feel like I probably go overboard telling others of Autism just so I know there is awareness. If I don’t say something, who will?

I hope this all has given you something to think about. Hopefully we will see more studies like this to come out.

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.

I’ve spoken of change being the Achilles’ Heel of Autism. I’ve spoken of my kids and fighting for their inclusion and school. After all of that, I know what I’m going through is probably pretty typical not just for me, but ANY parent anywhere sending their kids to school. I’m sure my mom felt it several times, with our entrance into school, then middle school, high school and eventually college. It is now my turn to start this journey.

My oldest boy is going to elementary school in a couple of weeks. We’ve beaten the rush to get school supplies. I have gone crazy getting him all Lightning McQueen Cars stuff. I keep thinking the other boys will think he’s the coolest kid with the coolest parents to have gotten him all this stuff. Of course, he doesn’t know about it, or else he’d perservate over it, and half of it would get destroyed before leaving the first day. But that’s really besides the point, right?

Now that I’ve gotten all of that though, I’ve started to think about past that first instant where everyone sees his cool stuff. He loves making friends, but he’s not near their level of communication or social skills. He gets to be in a regular ed class with other kids his age because he is so far ahead academically. I’m going to do everything to make sure he stays ahead in those areas because I know better than most, if you don’t keep and cultivate those skills, they start to suffer. The school is supposed to work with him on his communication, social skills and fine motor skills.

But I can’t help fearing this change. He has 9 weeks to prove himself as belonging in that classroom. The school has said that they are already full, as in, they are taking no more new Kindergarten students. He has not done well there during his ESY term, though I know that’s no indicator as the teachers, pupils and setup will all change. But I’m still very fearful of what’s going to happen to my little man. And will he fall through the cracks like so many of us did? He’s shy, and smart, and keeps it together around most people. Will he make up that gap? And how about lunches away from home? So many things to think about and of course, my anxiety is getting the better of me. But I know I need to for him and me to let him have his chance, let go, and make sure the schools don’t underestimate his skills.

I rather apologize for the absence of writing blog posts. I am writing up the other three portions of the conference, but want to make sure I have time to sit down and write from beginning to end without interruption.

Day 1 morning went well as you read. Afternoon? Not so much so. I was rather looking forward to listening to Mrs. Kranowitz as I’m very much a prescribed to Sensory Integration. What I heard was less than I had imagined. That’s putting it lightly. I think my actions during the afternoon best summarizes it. I actually left an hour before she was to be done. I NEVER leave public places like that no matter how upset I get. I rarely even do so to use the bathroom, let alone to come home.

She wasn’t there to teach us about sensory integration as I had assumed from the title of her presentation “The Out of Sync Child”. Instead, she used her 4 hrs lecturing us on getting our children outside more. She used this example.. She had us all think of a great memory from our childhood. She then told us that she guaranteed 95% of us had thought of something outside. Therefore, since our children never go outside, they will not have any good memories about childhood.

She also pulled another percentage out. Suggested, while admitting to having no sources for this, that 99% of all Autistic people have sensory integration. Now, I have no doubt that we all have sensory issues. Every human being has sensory issues. But to go as far to say that all Autistics have SID/SPD is ludicrous!

She also went into biomed information. This is where I got up and walked out. I have had my fill of wood-by “experts” telling me what I should “try” with my kids. I’ve done my research. I know that GFCF has been shown to help kids with gut issues, mine have not. I’ve seen it say the same thing for children who had multiple ear infections, mine did not. I’m not knocking anyone for trying them. I feel everyone can decide for themselves though. Instead, I have a teacher, not even an OT, but a teacher, telling a room of about 1000 adults, mainly professionals, to try diets. I am sorry, but she has no right in her position to do that.

Coming next… Temple Grandin.

Sitting here with the room not even half full, I realize just how different I am. I chose to sit on the edge to not feel closed in, and near the water so I can easily get a drink (despite bringing my own water bottle). The ladies behind me are talking and it is distracting me enough that I’m having a hard time writing this.

On the bright side, I made a contact with AutismSpot/SpotUniversity. I’m hoping through all my efforts we can get a great community of our own. And perhaps next year, I can get tables of our own.

More to come…

As much as the first part was negative, I will attempt to make this one much stronger and uplifting. While most of the links are blogs and personal websites, it is important to note that there ARE other places for positive support.

It is argued that even with support, some parents with Asperger syndrome simply may not be up to the enormous task. Raising a psychologically healthy child involves complex emotional interaction between parent and child, as well as the ability to avoid parental behaviors damaging to a child’s well-being. However it can be easily argued that many neurotypical parents have very poor parenting skills, and of course there are many parents on the autistic spectrum who have excellent parenting skills.

Some adults with Asperger’s syndrome rightly point out that many parents experience parenting difficulties as parents without being on the autism spectrum and that ‘aspies’ should not be singled out as being unable to be effective parents. Asperger syndrome parents should certainly not, be stereotyped or categorized as evil, uncaring, or intentionally abusive. If Aspergers syndrome does affect a person’s parenting skills, this would simply mean that appropriate support should be looked at, as it would be for a parent with anger management issues, depression or any other condition that could impact on their children’s lives.

That comes from Autism Help.org. If you would have looked at their site even a year ago, the negativity towards people having healthy relationships as adults would have shocked you. Luckily, due to changes in perception, this is no longer the case. Obviously, this is just a small snippet and doesn’t go into detail, but we ARE making headway.

There are sites across the web by parents who have come to discover their own Asperger’s. From Life with Asperger’s to Aspie World, you can see examples of parents talking about their lives, marriage, kids. Even some young adults just starting their journey in to parenthood are chiming in on their experiences.

There are some organizations for an Autistic convention, women, advocacy and education, not to mention, research.

It is my hope that we will be able to spread even more. To show that we can not only be good parents, but also, show that we can help neurotypicals some insightful ways to raise their children as well. (And maybe even be nationally recognized with news pieces on families like all of ours!)

We are writing to you on behalf of the Autistic Self-Advocacy Network. ASAN has partnered with researchers at multiple universities to create the AASPIRE Gateway Project (www.aaspire.org/gateway). The AASPIRE Gateway Project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance. We are excited to be involved in research that is conducted with us, not just about us. The AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum. You can find more information about the project in the announcement below. We would greatly appreciate it if you could forward information about the AASPIRE Gateway Project to anyone who may be interested in participating.

Regards,

Ari Ne’eman

Founding President

Scott Michael Robertson

Vice President

Board of Directors:

Paula C. Durbin-Westby

Meg Evans

Dora Raymaker

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

————————-

Participate in the AASPIRE Gateway Project

You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.

The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are

(1) to collect the Gateway Survey data;

(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and

(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.

You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.

The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.

Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.

If you’re interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:

1) Go to the study’s website at www.aaspire.org/gateway.

2) Send an email to info@aaspireproject.org.

3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison

Katherine McDonald, PhD, Portland State University

Dora Raymaker, Autistic Self-Advocacy Network