Disability and Child Sexual Abuse: Lessons from Survivors’ Narratives for Effective Protection, Prevention and Treatment – book information – Jessica Kingsley Publishers

Disability and Child Sexual Abuse: Lessons from Survivors’ Narratives for Effective Protection, Prevention and Treatment – book information – Jessica Kingsley Publishers.

 

I found this book online. I haven’t gotten a chance to look at it more but thought it looked interesting. Has anyone read it?

“high functioning”?

A lot of us hear that term thrown around.

One explanation of High Functioning Autism:

High functioning autism is not an official diagnostic term, though it may be used as such. It tends to describe people who have many or all of the symptoms of autism but did not develop language typically. It’s a helpful diagnosis that can help guide appropriate treatment and school placement. On the other hand, it is important to be sure that a “real” diagnosis (that is, one that is described in the official diagnostic manual) is also placed in your records. It is this “real” diagnosis which may pave the way to medical and Social Security benefits down the road.

One useful explanation of the difference between Asperger syndrome and high functioning autism comes from the National Autism Society in the UK. Here’s what it says:

• Both people with HFA and AS are affected by the triad of impairments common to all people with autism.
• Both groups are likely to be of average or above average intelligence.
• The debate as to whether we need two diagnostic terms is ongoing. However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions
• Although it is frustrating to be given a diagnosis which has yet to be clearly defined it is worth remembering that the fundamental presentation of the two conditions is largely the same. This means that treatments, therapies and educational approaches should also be largely similar. At the same time, all people with autism or Asperger syndrome are unique and have their own special skills and abilities. These deserve as much recognition as the areas they have difficulty in

So, the term “high functioning” is sometimes used to describe people who are on the “normal end” of the spectrum essentially. Those with Autism who can more easily pass. Or, those with asperger’s.

The question is, how do we measure functionality?

Today I spent the day doing testing to be part of a study for “high functioning” people on the spectrum. Throughout the day, I felt uncomfortable. I felt as though I had something to prove. My mind kept blanking every time I did a test and I felt like an idiot trying to answer all the questions (e.g. define the word calendar, number, presumptuous, etc). Yet, I knew that even if they thought I was stupid, they would just excuse it as me being less high functioning. If I did “too” well though, I felt that they were judging me even more. I spent the day worried that they didn’t believe me that I even have aspergers. At the end, they had another woman come in and interview me more. I felt as though she was interrogating me to see if I really have aspergers. She seemed not to believe me that I was diagnosed or to think it was a bogus diagnosis. I blanked out on how to explain what traits I have!

But, why do I care what she thinks?!

For starters, I want to be accepted into the study. I got $40 for today and I could really use money for the other steps. Not to mention that I really want photos of my brain!! Also though, I was worried of the “undiagnosing” me. I am an aspie. Having aspergers is part of my identity now. Sometimes it is annoying, but taking away the label isn’t going to make it any easier, it will just take away the small amount of solace I have in the sense of shared experience I have. I was scared that if I was too normal, they were going to take away part of my identity.

I was told by my college that if I wanted the accommodations I asked for, I should transfer to a school with a special needs program. I’m not high functioning enough to deal without having supports, but I seem to be too high functioning to be counted as “really” counting. I do suffer from my aspergers. I support the neurodiversity movement and do not hope for a “cure” to make all of us normal. However, I do suffer from a number of things related to being aspie. Also, I would have been much better if I had just been diagnosed earlier. It isn’t that I’m suffering “from” aspergers, it is that I’m suffering trying to fit some of those traits into the rest of my life and suffering to fit my life into the rest of the world.

It scared me that my identity could be “changed” by some doctor saying the word. I don’t know, if I were to get a different diagnosis, would I keep it instead or just ignore them? Anyone know what they would do?

I know a guy who was diagnosed when he was much younger with aspergers. He didn’t know about it until earlier this year because his parents didn’t think it was a real diagnosis or that he needed help. As far as I know, he did pretty well in school throughout and didn’t really struggle too much with his classes. However, socially he is super super awkward and has a lot of trouble. I am still shocked that nobody (since the original people) noticed something was up and tried to diagnose him. My only logical way to explain what I know about the two of us, is that I’m much “higher functioning” than he is when it comes to social skills but that he is less affected non-socially than I am. I could be wrong.

That however doesn’t fit in with how most people would view us. You meet me and, like many therapists, you don’t realize I have asperger’s. You meet him, most people know something is weird and that at the very least he is just a really awkward nerdy dude. So, if we were to both show up to be in a study or just both show up at a support group, he would be perceived as the “lower functioning” one. Despite the fact that I struggle even with the supports I have currently and he has never really had supports and seems to be fine. I can cook and he can’t though. I can respond to a conversation topic with an attempt to stay on topic and show that I paid attention. I am self-aware after learning so much about myself. He is not. So, how do we determine who is higher functioning?

Is our measure of success just how well we can “hide” our aspergers?

If so, most females I know with aspergers are super high functioning. Why does it matter to determine levels of function?

When many of us have found a way to overcome our labels and diagnosis and turn them into aspects of our personality and identity, why do we need more labels to make sure we are still judging ourselves?

Aimee Mullins on Disability

http://video.ted.com/assets/player/swf/EmbedPlayer.swf

Autism Blogs Directory

Articles

*Disclaimer: I have not read all of these nor am I posting them as a sign that I support/agree with all of their views. I hope to read more and be able to post based on endorsement but at this time they are simply what I am finding. Please let me know if there is anything offensive*

 

General Sexuality and Disability

• Sexuality and Disability Fact Sheet
• Sexual Functioning in Women with Disabilities
• Sexuality and Intellectual Disability

 

Sexuality and Autism

• Bibliography on Sexuality and Autism/AS

 

Disability and Abuse

• Individual Systemic Violence- Disabled Women’s Standpoint
• Abuse and Women with Disabilities
• Confronting the Sexual Abuse of Women with Disabilities

 

 

Please feel free to comment if you have any suggestions for articles

DSM Criteria for Asperger’s Disorder

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

The Issues

Just to reiterate some of my goals for this blog:

I would like to learn about what exists now as well as help improve for the future the following:

• Sexual education for people on the spectrum
• Prevention of these types of things from happening to people on the spectrum (at least prevention to a level closer to the general population)
• Tools for people who find themselves in those situations that are directly tailored for their needs
• Education and information for medical professionals and others who have contact with people on the spectrum to better understand the unique needs of the population

 

I have to organize and rewrite the notes I have but that is a slow process. I apologize for the delay. Feel free to comment!

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You have Aspergers? Really?! I wouldn’t have known…

Have you ever heard this? I have.

It is one of the most annoying things I hear (almost every time I tell someone). It often goes one of two ways…

1) Wow! I had no idea. You don’t have poor social skills at all. I wouldn’t have known otherwise since [insert something they think I am good at that they heard aspies can’t do]

2) Really? Are you sure? You really don’t seem anything like my [insert one person they know who is on the spectrum]. They [insert something they do that I don’t].

So, which is more annoying?

Well, the second one makes me want to punch the person in the face. People who (you might not be able to totally tell from how I wrote it, but in some cases it really is how they feel) think that I really don’t have aspergers. Somehow, they think I made it up or was misdiagnosed or just that I’m part of this whole aspergers “fad” (excuse me?! I hate when people say that). However, I know then that they just don’t know what they are talking about and I can ignore them.

First option. How am I supposed to reply? “Why thank you! I’m so glad that I fake it so well. I’m so relieved that my neurotypical disguise has been working!” or “It’s called coping mechanisms and teaching myself social skills through painful trial and error” or how about, “I’m so glad that you think that is a compliment. You might need to work on your social skills though since that is sort of rude and implies it is something I am trying to hide”.

I’m sure at some point I will want to vent about this more. I get way too many stupid comments about this stuff and it always drives me crazy.

High risk factors for sexual assault/abuse

• People with physical/cognitive/mental disabilities or anything other than “normal” often receive inadequate sexual education, if they receive any at all
• Those on the spectrum are less likely to pick up on social cues that could indicate danger or realize that they may have non-verbally implied things that they are not aware of
• Often people on the spectrum are “gullible” and don’t realize when someone is using them
• Prone to depression and a whole bunch of other not fun things
• Likely to be picked on in general and not have so many friends, so someone wanting to talk to or spend time with you seems great! (instead of seeming suspicious or dangerous in many contexts)
• Sexual activity can give social acceptance not otherwise available
• “Telling” on someone who does something to them would only make bullying/isolation worse
• Issues with appropriate boundaries
• so many other reasons…