The Limitations of the word "Neurotypical"

The word Neurotypical, or NT, is used quite a bit in the Autistic community to refer to non-Autistic individuals.  Lately, I've noticed some discussion on whether it is an accurate term, or whether there is a better term to use without being discriminating to the non-Autistic population. 

As I understand it, the term Neurotypical was created by Autistic persons in response to the use of the word "normal" when being compared to the rest of the human population.  Many times, it's been used mockingly, through parody sites such as the Institute for the Study of the Neurologically Typical. 

I've also seen it used as a shorthand, or as an alternative for non-Autistic people. 
From what I can see, there has also been some debate on whether Neurotypical includes or excludes other variants of neurological diversity, and how exactly the term should be used, if at all. 

However, if one considers the Neurodiversity philosophy, then the term Neurotypical is at worse a flawed term, and at best a term that will become, in time, irrelevant and fall out of use.  Or else will come to encompass Autistic individuals as well as other forms of diverse neurology.

This is because Neurodiversity philosophy considers Autism as a natural part of human diversity, thus making it a part of human typicality, or normal.  As this becomes a fully embraced concept applied to all forms of neurological diversity, there will be no need to make and use the term Neurotypical as a division between neuro-types. 

In a sense, we will all be Neurotypical, so there will be no need to use the term anymore, except for an explanation of previous articles and texts. 

In this context, I don't really see a point in creating an alternative term, since if there are improvements in the world, the term will be discontinued.  It is a term with a very limited period of use.  To create an alternative, then, is to halt the progress that we have been making, and even to discriminating to other members of diverse neurology.

After all, the ultimate goal of creating the term Neurotypical is to eventually not use it.

Press Release from ASAN on PBS' Autism Now

Whew! I'm currently recovering from the end-of-school-year crunch. I had several papers due within days of each other, plus an online exam and a relapse in Panic attacks. PLUS I've been doing some work for the Canadian elections advance polls, because democracy is cool.

However, I just got this press release from the Autistic Self Advocacy Network, and since I've been paying some attention to what's been going on, decided to share.

AUTISTIC COMMUNITY CONDEMNS PBS NEWSHOUR'S "AUTISM NOW" PROGRAM FOR IGNORANT REMARKS

Robert MacNeil claims needs and perspectives of Autistic adults today not an "urgent issue"

WASHINGTON, DC (April 27th, 2011) - An outpouring of widespread anger emerged from the Autistic adult community last night as journalist Robert MacNeil of PBS NewsHour claimed that issues facing Autistic adults were not "an urgent issue" and not important enough to merit coverage. Asked why his "Autism Now" series failed to include autistic adults amongst those invited to participate, MacNeil stated, "We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it. But they speak for themselves. And we didn't see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism."

"Robert MacNeil's comments last night displayed a level of ignorance that is shocking to hear for a professional journalist," stated Ari Ne'eman, President of the Autistic Self Advocacy Network (ASAN), "To ignore the widespread discrimination, lack of services, un- and under-employment, stigma and countless other issues facing hundreds of thousands of Autistic adults todayis unconscionable. Furthermore, to pretend that any comprehensive account of autism is meaningful without substantively engaging with Autistic people ourselves is disgraceful and offensive."

The series had already attracted significant criticism from self-advocates and other community members, who were disappointed in comments MacNeil had made in promotional interviews claiming that Autistic adults were disproportionately violent and lacked empathy, popular and inaccurate stereotypes about adults on the autism spectrum. Numerous e-mails, blog posts, phone calls and other communications from self-advocates on the autism spectrum had expressed that inappropriateness of those remarks as well as failing to interview or involve Autistic people themselves in what was billed by PBS as "the comprehensive look at the disorder and its impact that's aired on American television in at least five years."

"I am an Autistic person who does struggle with daily living needs. I am really bothered by Robert MacNeil saying that people like me don't have 'urgent' challenges," said Savannah Logsdon-Breakstone, an Autistic woman and neurodiversity advocate in Utica, Pennsylvania. "By not talking to Autistic adults in his series, Mr. MacNeil is ignoring the unemployment, risk of homelessness and many other problems that people like me face."

The Autistic Self Advocacy Network (ASAN) is the nation's leading advocacy organization run entirely by and for Autistic adults and youth. ASAN's supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization's activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.

Note: The previous quote has not been edited by me. Other than font size, cause it was a little hard to read. Also, my general response to Robert MacNeil have not been nice, so I will refrain from posting them here.

Buttons!!!

I love buttons, the pin kind that I have a small collection of, and the image kind for links and stuff.  I've been busy working on assignments for school, but I do manage to browse a couple of places online, and decided I need a button.  So I made one. 

Feel free to use if you link to here.


And in other news, April is Autism Awareness Month, apparently.  Huh, that time of year again.  I always have fun with this, because I'm in Canada, and usually we have an Autism Awareness week sometime in Fall....

April is a rough month for me, to be honest.  The demands of schoolwork aside, it's an emotionally rough month.  April 1st is the anniversary of my Grandpa's death, and that was an event that deeply impacted me.  Each year, when it comes around, I am always struck with great grief.  Some years are better than others, some years I can get by just fine, other years I am struck with depression and anxiety, which shakes me up pretty badly.

Hopefully this year won't be so bad, but please excuse me if I'm a bit absent a while longer. 

I have written a piece for The Thinking Person's Guide to Autism for April.  I'm not sure when it'll be up, but I'm pretty sure that it will be, and I highly encourage people to check out all the stories they'll be posting for this month.

Developing Apps for Autistic Adults

First and foremost, I want to apologize to my regular readers for the lack of updates lately.  I've never been good at being consistent at the best of times, and being in school adds a whole 'nother level of distraction for me.  The two courses that I'm taking are online, which apparently means that it requires a lot of feedback, which, given my learning disabilities, becomes problematic.  As well as new opportunities to test some apps, but that's a different post.

Second, I was recently contacted by Johanna Manikiza, asking my help and advise about apps for Autistic adults.  She is an ASD Regional Support Officer at the Social Services Improvement Agency in Wales, UK. Her team supports the implementation of the Strategic Action Plan for ASD, and they are looking into the use of mobile phone apps to support Autistic Adults.  They have been able to secure funding to develop an app, and was thinking about developing one to support sequencing daily activities.

However, they've decided to gain feedback and suggestions from the Autistic community, and contacted me due to a comment on one of my blogs about the need for a social skills app to support Autistics in adulthood.  Johanna has asked for both my input, and the input of others that I know. 

I want to say thank you to Johanna and her team, for making the step to include us in decisions and supports for us.  It demonstrates true community-building attitudes that can really make a difference.

As for my readers and fellow Autistics, this is a chance for us to work with others to support one another.   I highly recommend getting in touch with Johanna's team with your suggestions and advise about developing apps to support Autistic adults.

They can be contacted at ASDinfo @ WLGA.gov.uk, and would appreciate any feedback that we can provide them. 

50 Best Blogs from OnlineUniversities.com

Edit: I've been notified that the whole 50 Best lists thing may be a scam. For the safety of my readers, I've removed the link to the post until further investigation.

I got this email sometime after my last post, and was first distracted by jubilant glee, the fact that I have two assignments due Friday, and a complete emotional crash that I'm not going to get into on here. Let's just say I had my hands full, and bounced around the entire range of human emotions, and almost the entire spectrum of functionality, within less than 12 hours.

Anyways, the email I got is this:

Hi Corina, We at “Onlineuniversities.com”, wanted to let you know that we featured your blog in one of our recent articles on our own blog. 50 Best Blogs for Special Needs Teachers, is linked below and could be a fun way to share this announcement with your readers. Either way, I hope you continue putting out great content through your blog. It has been a sincere pleasure to read. Thanks, Kaitlyn cole

I'm number #26, in the Neurodiversity section, where I am described as such: "In spite of its relatively lax update schedule, No Stereotypes Here still provides special education teachers with straightforward talks about the autism spectrum."

I'm mentally adding "from an autistic adult" onto the description, but am fairly pleased (and laughing; I have an update schedule?).

There are also some other interesting blogs on the list, some which I know, others than are new and which I'm hoping to get to know soon.

Questioning Autism Speaks

I recently had a discussion with the Autism Speaks twitter account, which was an interesting experience. It is very easy, I think, to generalize when talking to an organization's account. I was constantly editing myself from saying "you" to "your org" (org stands for organization), and remind myself that while the person on the other side is speaking on the behalf of the Autism Speaks, that person is not the whole of Autism Speaks.

That aside, the conversation was started when I found Autism Speaks following me on Twitter, and a friend and I were discussing why, even though I strongly dislike the organization, I wasn't outright blocking it. This is because although I oppose a lot of what Autism Speaks says and does, I still maintain that it's possible for the organization to change and become something that I might actually support, and part of that is keeping lines of communication open.

What sparked a rather heated discussion was when the Autism Speaks twitter asked me why I disliked them so much. Some of the reasons included the censorship of an autistic teen's parody website; the many "awareness" videos that have demonized and offended not only Autistics around the world, but over 60 disability organizations; the fact that according to their own IRS 990 forms for 2009, only approximately one cent from every dollar raised when to providing assistance to Autistic families and most of the money goes to CEO salaries, first class expenses, advertising, and research for things that many of us disagree with, such as a "cure" to Autism; and the resounding fact that despite it's slogan of Autism speaking and listening, Autism Speaks ignores a lot of what Autistics say and have made some public relations attempts to appease us, without addressing the fact that there is not one Autistic individual on the Board of Directors or in any major influential position that indicates that Autism Speaks is actually speaking for Autism.

It is the opinion of myself and many others in the Autism and cross-disability community that until these issues are met and dealt with, that Autism Speaks has no right to claim to be the voice of Autism, and that it is a corrupt organization posing as a non-profit.

I went into the conversation thinking that maybe I could at least talk to one person in Autism Speaks about the issues I had with it, and found myself becoming increasingly angry. Despite the links to their own website, the person on the Autism Speaks account denied everything, and said that my facts were wrong. That because the Better Business Beau gave them a high rating, that my facts on where the money goes, and how Autism Speaks treats Autistic individuals, is wrong. They refused to make discuss anything else regarding my disagreements with them, ignoring my questions on how Autism Speaks is changing for the better and just repeatedly stating that I was wrong, wrong, wrong.

Which, if you imagine, doesn't endear them to me any more, and if anything, has only re-enforced to me the issues that I have with them.

What I wonder is this, is it really bad PR for Autism Speaks to admit that they've done wrong? To say "Yes, we did this this and this badly; this is what we plan to change about ourselves"? I understand not wanting to admit that they made a mistake; no one really does. But I think that Autism Speaks will gain far more by being more open about these issues.

By admitting their mistakes, they show humility, compassion, and respect towards the Autistic individuals who they've wronged. It sparks not only healing and commitment to change towards those individuals, but within the organization itself, and prompts it to be responsible.

By committing and then doing those changes, Autism Speaks will actually win over all the Autistic and supporting activists, bringing together the community for the better.

So really, I wonder, how can they afford not to do this? Or are they that paralyzed by fear? Or are they really as corrupt as we think they are?

Poverty and Affordable Housing

This may seem a bit off topic-ish, especially with the news about Wakefield going on. To be perfectly honestly, I'm not entirely surprised that he's been found to have changed the children's data and it really hasn't changed my opinion about him (see The Triggering of Wakefield). So I'm going to continue on and address an issue that affects a lot of people, not just Autistic people.

Poverty and homelessness is an issue that face Autistic people, as well as people with and without other disabilities. A concern for those with disabilities is whether homeless shelters, women's shelters and other services are supportive of their disabilities, and uncertainty may be a big factor in whether disabled people access such services. Which kinda creates a cycle unless it's specified that services are accessible to disabled people.

My government has been working to create unique programs and services for people with disabilities specifically. One of these has been the Ontario Disability Support Program (ODSP), a social assistance program that provides the basics: a little over $500 for living costs such as food, telephone, etc, and up to $450 for rent, per month. It's basically a safety net for people with disabilities if they are between jobs, or recovering from a bad period, and the program even includes an Employment Support services, and will cover some additional medical costs, such as service dogs, diabetes supplies, breathing machines, etc.

For the other services it doesn't cover, being on ODSP qualifies people to other programs. There's a lot of paperwork involved, of course, and it requires people to be as productive as possible while describing their worst days. But one of those programs in my city is the centralized housing list for subsidized housing, since $450 doesn't get you a decent place to live in this area.

The problem is that there's a lot of people on that wait list. My city does a magazine, profiling restaurants, venues, and highlighting city issues. In the latest issue, it reports that as of July 2010, there are 1,133 applicants currently waiting for access to social housing. With the given rate of vacancies in the city, it can take at least six months for a three- or four-bedroom unit, or up to eight years for a single-room unit.

Obviously, there needs to be more available units and in the magazine article, the issues surrounding making decisions on where to build mixed-income housing is discussed. However, due to various difficulties (such as the city's own zoning and building restrictions), it can take up to eight years for many housing units to start being built. In the meanwhile, there's still a lot of people waiting for places to live and call home.

I faintly recall a few years ago a plan to start a portal subsidized housing. The idea is that people on the housing list can find a place to live on their own and get off the housing list a lot quicker.

It's like this: say I'm on the housing list. I've gone through the application process and have been approved for social housing. Instead of spending eight years couch-surfing or hopping between shelters or enduring abusive situations, I can look around for a place that meets my needs.

After some looking, I find a nice apartment that's easy for me to access the public transit system, a grocery store, as well as other services, or at least to be able to get to other services. I'm on ODSP though, and can only afford $450 a month, and the apartment is $750 a month.

I talk to the landlord/lady/person, and make an agreement with him that he'll hold the apartment while I apply to the housing list. Then I fill out a form, asking for support for the other $300 for rent from the social housing program. The landlord/lady/person and I fill out the details of the place, sign it, and submit it. If everything checks out, the housing list approves of it, and there you go, I have a place to live and I'm off the housing list a lot quicker.

Of course, I don't know all the specifics that this would have to be put into place, but I think it's better than a waiting game where one never knows when they're going to have a place to live. Also, it gives the people a sense of respect, dignity and control over their own fate.



Edit: minor editing over the difference between rent and ODSP; I really can't do math in my head.