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!)

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….)

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

I have so many things I’m wanting to touch on. I think tonight after the boys are in bed I’m just going to have to start making posts. I will wait to publish until consecutive days. I would like some input as to what those of you who are reading would like to hear about.

In the upcoming days, I’m going to be discussing Self-Advocacy on a Global Level, Issues with Cassandra Affection Deprivation Disorder, ABA to the Autistic Family, and Reinvention of the Family.

Please give me anything you would like to read about.

As if it’s not obvious, I have upgraded the website. We’re not running on WP 2.8 and bbP 1.0 RC3. The final of bbP should be coming out relatively soon. When it does, I will upgrade again. I don’t foresee any problems using the release candidate, but please do let me know if you run into any problems.

As well, I’ve used a service to get a more seamless integration. I do need to figure out why I’m getting their default logo for the posts. I am also looking for a way to have a feature news story at the top and underneath the categories, a way to have a livefeed of other blogs which are of importance to AS parents.

Finally, I redid the logo. I mainly did this because I’m hoping to make myself a t-shirt. I liked the old logo, but it doesn’t suit my personal taste for apparel. The new colors I feel do. If for some reason others decide they’d like to make it into a t-shirt, I don’t mind sending out the logo via email. I do have it in a much larger size. The logo was created by manipulating an infinity sign, adding a spectrum of colors, and then adding the two newly formed letters together. So there is an element of the neurodiversity movement symbol in it.

Please let me know what you think and if you have any suggestions on improvements!

Before we moved back to Texas, we lived in a 5 room apartment, 2 bedrooms, two open layout rooms that were supposed to be a living room and a dining room and a eat-in kitchen. As with most parents, we kept our room somewhat off bounds to the children. I bring this up because a moment has just occurred in our new home that I don’t think would have worked out so well in the old home.

I have had a long week so really wanted some “me” time. D, my oldest, has been off because his day isn’t as structured as it would be with school. S, my youngest, is himself, but that means attached. So getting me time would not have been possible before. But instead, I am getting time right now to post this.

We have two different living areas, plus bedrooms, plus dining areas here. So while I’m in here relaxing, D is in his bedroom, in his tent, playing his Gameboy SP. Where’s S? In the other living area watching his cartoons. It won’t last for long. Someone will want some more time with someone else. But it is nice to have separate space, in separate rooms, so we can all relax a little.

I must say, this is how I imagine an Autism Independent Living neighborhood would be as well.

I feel sad saying this, but I’m starting to think along these lines. Neurotypicals to Atypicals. Curebies to anti-cure. However you want to phrase it. I didn’t start out thinking like this, but slowly, due to feelings of rejection, I really think there are some fundamental differences.

I wanted to touch on this last night, but decided the Welcome was enough. I started to write a post, but this morning, due to a little discussion on a listserv, I’ve decided to start over. The comments were about how parents with Shadow Autism were “disrupting” the innerworkings of many Autism groups.

First, we must analyze this Shadow Autism, which I had never heard.

Definition: Autism is a spectrum disorder, meaning a person can be a little autistic or very autistic, and individuals can have varying symptoms. The term broad autism phenotype describes an even wider range of individuals who exhibit problems with personality, language and social-behavioral characteristics at a level that is considered to be higher than average but lower than is diagnosable with autism. Individuals who meet the criteria of the broad autism phenotype are identified through a test called the “Social Responsiveness Scale.”

It is theorized that parents who are a part of the broad autism phenotype are more likely than other parents to have multiple children with autism. Some studies seem to support this theory.

So the Shadow Autism just means autism-like symptoms, but not enough to diagnose. I know this does not classify us who are on the spectrum. The issue I came to today is that the particular email in question was the “push aside the feelings” attitude of the neurotypical father. We have a hard enough time understanding them and trying to make our voices heard. Then to be told our opinions on how things are handled disrupt the organizations who are trying to help is disappointing to say the least.

We need to make our voices heard to gain acceptance, but more often than not, instead of being accepted, we are seen as confrontational. We need to keep trying to understand them, but we also need to keep pushing our own agenda too. What was worse was the response to this email that we are all working to the same goal.

Our goal is acceptance whereas theirs is one of conformity. And so here I am trying to find the way we can all work together without falling apart. Us and them together as one when there is such dissention. We have a long way, but I’m sure there is a way.

Thanks to my friends at ASAN, AS Parenting is getting some exposure. I wanted to welcome those who happen to click links across “blogdom.” ASAN has been wonderfully inviting.

ASAN, Autistic Self Advocacy Network, is what it sounds like. Autistic people advocating for change. I first heard of the group during the 2008 political campaign. Many parents of autistic kids fired arrows at the president of ASAN, Ari Ne’eman, saying he didn’t know what it’s “really like.”

At the time, I was pretty new to the neurodiversity movement. While I agreed with the sentiment, I had a hard time defending his statements. I refound ASAN when I finally settled back down here in Texas. After having reconfirmed my Asperger’s diagnosis, I can say without a doubt, I know what it is to live in an alien world.

I do believe, no matter how naive it sounds, that we can live in harmony. Whether or not they can live in harmony with us, we need to try to understand them as much as we want them to understand us. More on these thoughts later.

If you would like to be included in writing for ASP, please e-mail me! I would love to include others thoughts and suggestions!

From here

To put the story simply, last year, one poor little boy endured the unimaginable. His kindergarten teacher put up for vote who in his class wanted to kick him out. They suspended the teacher. The ruling came down today that she will keep her tenure, her job and her contract.

This scares me, for kids like myself, for my kids, for the whole of the Disability community. We are not being heard. It would be one thing if we weren’t speaking up, but that’s not it at all. We are being ignored.

This is a stark reminder for me. We need to push the envelope to make ourselves understood. Otherwise, this will keep happening. We will keep being ostrisized. What’s worse is our kids will be as well.

And a brief warning, don’t read the comments following if you don’t have a strong stomach. There are some very cruel and heartless comments from so-called adults. It shows just how far we have to go to be accepted.