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Tuesday, October 22, 2013

A lovely guest post from Mark Kent..

Ooh what a life
I am a disabled adult, asperger syndrome and ME. Think how very difficult this is. 

I am married - 13 years this year to a wonderful, wonderful wife Tabitha who is not disabled in any way. When people meet Tabitha they are stunned. First that Tabitha is no disabled and second how beautiful she is. 

We have three very, very  fantastic children - aged 12, nine and less than a year.
Because I have Asperger’s Syndrome it took me over half my life to find the right relationship. September 1996 Tabitha and I first met, but before this I was very, very, very alone.  A nobody, a nothing. 

“Everybody” around me had boyfriend/girlfriend, married children of their own. All these and only these things in the world I ever wanted, but I have Asperger’s Syndrome which was making this a great deal more difficult and harder. I have had to dig very deep to get where I am today.

Tabitha and I had so much in common. We lived half a mile from each other, well, next street up. We both knew the same friends. We both were bullied at school. We started going out together then two years later moved into a flat together in Peterborough, Cambs. This was Hell, people calling us bad names.

 We got married in 1999 and moved into a house in March, Cambs, then our children arrived.
The moment at our wedding when I said ‘I do’ I was in floods of tears. I could not believe I was getting married. I could not believe this for me was no longer a dream. 

But three and a half years ago I was diagnosed with ME and put in a wheelchair. I cannot work but I do take part in a lot of research from universities in London, Cambridge, Manchester, Norwich and Sheffield. 

Today I have been to a London University doing research. I’m on the train home at the moment.
I have a lot of health problems like asthma, so for asthma UK I am a research and policy holder, meaning I can be interviewed on television or radio and newspapers all about asthma. 

I said we have three children. Our third, a girl, was born last year weighing 8lb 12oz. I cut the cord. I mean, come on, not many fathers do this. It is something very big for any disability.
I was in London City University taking part in research. I’m writing a book, Taking Part In research. I have nearly finished and I am looking at if my book can be published.
13 years married to Tabitha and I have three fantastic children there’s an age gap of 17 years between us.

What a life to live! 

*Mark is interested in talking to anyone who has questions-or who would like to chat..please feel free to email me-and I will get you connected-thanks Kathleen

Friday, October 18, 2013

Book Review:Chicken Soup for the Soul: From Lemons to Lemonade

Chicken Soup for the Soul: From Lemons to Lemonade
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101 Positive, Practical, and Powerful Stories about Making the Best of a Bad Situation
When life hands you lemons... make lemonade! This collection is full of inspiring true stories from others who did just that, and will help you make the best of any bad situation. You will find inspiration, encouragement, and guidance on turning what seemed like a negative into something positive in these 101 sweet stories of success!








I've had this book since September, waiting to review it for our autism community, but given the difficulties we've been dealing with, it's been challenging to decide when was the right time to share about this book. Sometimes smack dab in the middle of horror is not the best time. It's been over six weeks since so many of us were shocked and horrified by one of our own bloggers and friends attempting to kill her autistic daughter and herself, and maybe it's far enough removed that offering this book as suggested reading will feel appropriate.

The harsh reality is that there's always something sad, horrible, terrifying going on in the world, and often to people we know, if not ourselves. So what Chicken Soup for the Soul attempts to do by offering uplifting essays so that we can find ourselves a little less alone is really a good thing.

There are a variety of stories in this volume, and I think there's enough variety--enough kinds of lemons--that readers who gravitate towards inspirational volumes will find this a welcome addition to their collection.

Let's face it, sometimes it takes awhile to see how to find or make the good in a situation that feels hopeless. One thing this book does is remind us that it is possible.

And that, my friends, is always a good thing.

KWombles

Autism and Divorce

Despite evidence to the contrary, the idea of high divorce rates in parents with autistic children continues to resonate with a portion of the autism community. Big numbers make for dramatic effect. And if there's one thing we like, it's drama.
--KWombles
I wrote the following in 2010 on the inaccuracy of the oft-repeated 80% divorce rate:
A 2010 study out of Kennedy Krieger Institute today shows that this statistic is emphatically not correct: “64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.” According to the website, researchers came up with these figures from “ data from the 2007 National Survey of Children’s Health[1] , they examined a nationally representative sample of 77,911 children, ages 3 to 17.”
This a myth that is prevalent on the internet and was even repeated by an Autism Speaks presenter at a conference I attended in 2010.
One place this myth is presented is at The News on “The Faces of Autism” by Adam Richardson. Granted this is a fairly old piece, dated May 2008, but it’s still relevant, considering the tendency of many writing on autism to engage in quasi-journalism and quoting (and it could be argued the making up of statistics to suit one’s purpose). Richardson writes of a mother with an autistic child:"Lindblad says more than 80 per cent of marriages with an autistic child end in divorce. She’s living proof.”
Does Richardson ascertain the accuracy of the statistic? Nope. He presents it again at the end of the piece and makes no distinction as to its accuracy:



“FACTS AND MYTHS ABOUT AUTISM 

 • The divorce rate for autistic parents is over 80 per cent.

• Not all autistic individuals possess special skills and genius abilities. Movies like Rainman created a stigma around the disorder. Less than 10 percent possess “savant” abilities shown in the popular Hollywood movie.
• Not all autistic individuals are withdrawn, avoid eye contact and engage in self-injurious behavior. Many are outgoing and work well within groups of children.”


So, is this 80% a fact or a myth, Mr. Richardson? Do you know or care? Garbage reporting like this seems to be, gasp, epidemic.
Of course, the whole autism ruins marriages and just about everything it touches isn’t new. Kristina Chew wrote more than once on the myth of high divorce rates for parents of autistic children back in 2007.
Lisa  Jo Rudy at Autism.about.com has also touched on it in the past, writing:
“In short, while I don’t honestly believe that 80% of parents with autistic children divorce (because there’s no basis for that figure), I certainly DO believe that 80% (or more) are often under extra stress.” Rudy covers the new study, noting that Disability Scoop has reported on the study’s findings.
Why do people rely on what research shows for one set of numbers and then pull out another set of numbers with no backing? And the comments are even more illuminating and proof that people rely far too often on the availability heuristic. If it’s easy to recall, then they believe it is true and representative. It’s sort of like the global warming thing: it can’t be real because it’s colder than usual where I live. Folks, there’s a reason scientific evidence trumps anecdote.
*This 80% figure is all over the internet. Susan Leiby throws it out there in an effort to get families assistance by appealing to pity: “80-90% of marriages fail when a child with autism is involved.” Another newspaper uncritically runs with the figure, as well: Denise Ryan in The Age writes with no substantiation: “As well, up to 80% of marriages fail in households where a child has an ASD.”
It keeps going, though. At TACA, Mary Romaniec writes: “The divorce rate in couples who have a child on the spectrum has been suggested to run as high as 80%.”
There seems to be a never-ending parade of folks who like to say statistics say blah blah. I completely get where the Freakonomics authors were coming from as they pointed out the pedophile numbers on the internet, a supposed even 50,000. Here a minister’s wife passes along the bad information: “Statistics estimate that 80 percent of marriages that have a child with autism fail.” No statistics don’t say that. Another urban legend is born.
This alone ought to make it clear why scientifically-minded folks tend not to rely on Joe Blow saying something. It’s usually bullshit.
And sometimes it’s myth that reaches all the way to governmental bodies, like Australia’s Parliament, where Don Randall uses the made-up statistic : “Parents of children with autism face immense challenges. Aside from the care of their child, the resulting stress is enormous, and studies show that up to 80 per cent of marriages where there is an autistic child fail.” Come on, people! Studies say. Statistics show. Where’s the actual studies, the real statistics? You heard it and it sounds good. It makes the folks who stay married appear all the more heroic and it makes it so much clearer that autism is a burden that ruins lives, right, if 80% of marriages collapse under the weight of autism?
Oh, look what I found: National Autism Association spreading the myth: The divorce rate in the autism community is estimated at 80%. In an effort to help keep families together, NAA is developing a new program that will provide marriage counseling to parents of children with autism.” I thought they were going to confirm the number before using it?: “NAA is presently conducting a national divorce survey of autism families. Several organizations and news outlets have used the often-quoted autism divorce rate of 80%–NAA hopes to confirm or update that percentage before referencing it in its program materials.” And this was all the way back in June 2007. It’s been 2.5 years; haven’t they figured it out yet? Well, as of this December, they decided to hedge it some and write: “Divorce rates are disproportionately high within the autism community. Government aide is needed for these struggling families.” They are, of course, soliciting donations.
Now, interestingly enough, in the NAA’s letter to Obama, those divorce rates: “Then again, skyrocketing divorce rates in the autism community really need our attention along with the fact that “autism” is just a word some guy came up with 70 years ago to describe a new, rare mental condition that we’re finding is actually more environmental.”
Again, high divorce rates make it so much worse, right? What does all this do? Prove that it’s about the blame-game, victimhood, everything and anything but about the autistic individuals.
Age of Autism’s loyalists buy into the whole thing kit and kaboodle; some of them even elevating it to 85%.*
What are some realistic estimates of divorce rates?
According to the National Autistic Society, “Siegal (2001) suggests that the divorce rate for couples with a child with autism is the same as that for the rest of the population.”
Kevin Leitch weighed in on the subject this past March, and it’s well worth the read. Leitch discusses the Easter Seals’ survey and its findings that showed that divorce occurred less in parents of children on the spectrum. Leitch also covers the new study at Left Brain Right Brain.
Sobsey’s (2004) conclusion regarding divorce and parenting disabled children is worth repeating in full:


“In short, evidence for increased marital discord and divorce rates among parents of children with disabilities is weak and inconsistent. Many more parents of children with disabilities report positive effects on their marriages than report negative effects, and many others recognize that having a child with a disability has little to do with the quality or durability of their marriage relationship.

There may be a very small increase in the incidence of divorce among parents of children with disabilities as compared to the general population, or there may be no increase at all. Findings are weak and inconsistent. Even if a small increase in the incidence of divorce exists, it is probably more likely that this increase is attributable to differences in parents’ attitudes and behaviour rather than any effect of children with disabilities on their parents. Whatever the causal factors, many families with children, including many families of children with disabilities, experience marital discord or divorce. Whether or not having a child with a disability is a contributing factor in some cases, marital discord and divorce are difficult for all family members. Researchers should focus future efforts on understanding how children with disabilities and their families experience divorce and what can be done to assist them during what is often a difficult time in their lives.” (p. 80)
I sincerely hope that autism organizations get it right from now on, and that this myth ends. It does a tremendous disservice to families.

(Journal) References:
Siegal, B. (2001). Quality of life: preventing mental separations and legal divorce. What we (don’t) know about the effect of autism on divorce, Advocate, 34(2), pp. 26-29. Available from the NAS Information Centre
Sobsey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: Chicken or egg?. Developmental Disabilities Bulletin, 32(1), 62-83. Full text available at http://eric.ed.gov/ERICDocs/data/ericdocs2sql/content_storage_01/0000019b/80/44/c2/a5.pdf
Web sources have been hyperlinked in the text itself. Siegal’s article was not directly referenced, but the quote taken from the NAS’s page.

(updated to link to Rudy’s coverage of today’s study)

Thursday, October 3, 2013

Yes, That Too Guest Post by Alyssa

Language for Perspectives on Disability

Trigger Warning: references to ableist slurs

It's for the class, Perspectives on Disability.
The question is:
What language do you use to talk about disability? Why might person-first language be helpful?
Yeah, it's leading. It implies that person-first language is inherently better, which, um, no. And the professor has a stepson with autism, so... this is going to be fun. Here's the answer I'm giving.

The language I use to talk about disability varies depending on many factors. The first factor is who I'm talking about. If I'm talking about one specific person, the language preference of that one specific person is the only factor I'm going to think about. That's it. The language they want used when referring to them and to their disability is what I'm going to use. Sometimes that means "person with autism." Sometimes that means "Autistic person"- that's what I am. Sometimes that means "person with CP." Sometimes that means "palsy person." Yes, I really do have a friend who has palsy person as one of her accepted terms- she blogs at That Crazy Crippled Chick.
If I'm talking about a group of people, my language depends on the group. If it's a group of people who are together as part of an organization, I look up the organizational preference. Sometimes that's person-first, sometimes it's not. The Autistic Self Advocacy Network (ASAN) uses identity-first language. TASH accepts both, largely because of working with ASAN and the ASAN people wanting to be able to use identity-first language when talking about themselves. Some organizations will want "person with a hearing impairment." Others will want "Deaf people."
For a group that's outside an organization, I check on the individual member's preferences. If I can't find theirs, I see if there is a preference for their specific disability as a whole. (Blind/with low vision, Deaf/with hearing impairment, and Autistic/with autism are examples of there not actually being a consensus, no matter what people on the individual sides may try to tell you.)
The language the people use talking about themselves can provide clues, too. When I talked about Ethan, the author of "Ethan's Story: My Life with Autism," I could guess from his language that he prefers person-first, so I used it. I called him a person with autism.
When there really is no way to tell what the preference is for the people being talked about, it can go one of two ways. If it's autism and I can't tell, I default to my language preference, since I am Autistic. Otherwise, I go for "what is the majority preference of people with this disability/these types of disabilities in my audience?" followed by "what is the majority preference of audience members in general?" When I wrote a piece for ASAN about the use of the R word, my use of "people with developmental disabilities" came from majority preference of people with these types of disabilities- autism isn't the only developmental disability out there, not by a long shot, and as far as I know, none of the others have major pushes for identity-first language going on. With "the whole internet" as my potential audience, I went for person-first language.
Person-first language has things it was meant to do when it was first put forth by self-advocates. Those are good things. It's supposed to be about seeing people as people. It's supposed to be about respect. It's supposed to be about recognizing humanity, essentially. For people who prefer to be referred to using person-first language, it is the most respectful language to use. For most disabilities, it's a safe default, too. That's another use. It's better than assuming we know a person is suffering because of disability, certainly- I'd not censor someone who does think they are suffering from something, but it's really presumptuous to assume that they are! So that's another way that person-first can be good- it beats a thing that's presumptuous as can be. It's just not something we should insist on using to describe people who don't want to be described that way. That's about respect too.

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