Aspies For Freedom

I would just ask if it causes you concern. It obviously depends on the size of your university too though, but usually there's always a room free somewhere (I go sit in empty seminar rooms and read sometimes). Always worth asking I guess...

Wasn't Schziod PD the blanket diagnosis for most 'pathology' related conditions? I'm reading Joan Gomez' Living With Asperger Syndrome and there's a little bit of history in there. Its fascinated me that some Aspies are misdiagnosed as schizophrenic - according to this book, someone in a schizophrenic 'episode' can display traits associated with AS and apparently thats where the confusion comes from. I don't know if it can be applicable to other people, but I find it interesting as I grew up with schizophrenia around me and was consistently told I'm exactly like my father in terms of personality. My temper, when it erupts, is extremely frightening for whoever my anger is aimed at (one of my friends, who thinks she has AS, is equally as bad tempered and sharp tongued, but has said she'd hate to get on the wrong side of my temper. Which is odd, because I'm equally as scared of hers lol). I get paranoid at times which is odd because for the most part, I don't give a toss what people think of me. I have one jacket and I wear it all the time, or I don't wear a jacket at all. Either way, my rucksack always comes with me; I have a small bag but I don't like it because I can't carry all the things I want with me. I have the same pair of skate shoes that I wear constantly (I have about 5 pairs of casual shoes but I don't like any of them anymore) and I oddly like bright colours (I nearly always wear red or purple every day), my mp3 player is always with me... so I know I kinda stand out when I go out. I get attention when I don't want it (girls are so bitchy btw... I was out at the pub with my partner and because some random guy kept looking over at me and smiling and joking, some random girl was giving me evil looks) and that can really make me paranoid at times. Other times I'm very happy in my own little bubble... when I was a kid I used to bark at our pet dogs and say I could understand them. And I frequently make up my own languages and sit giggling at them. I don't talk to myself as much as I used to, but thats probably because my mother made a huge point of saying I was 'mental like your father' and I've spent about 10 years being too frightened to be myself.

I'm not saying that schizophrenia and AS are suitable bedmates, because they are mutually exclusive. I just find the confusion and surface similarity around the two interesting. It makes me wonder if I got AS because of my dad - I never knew him before he took ill, but apparently he was 'random' and similar to me in personality. He spent a couple of years in New York where he took a sh*tload of drugs and apparently always thought it was funny to wind up the natives with the subtle language differences - like pants/trousers etc. Wore heeled shoes (he's only 5'2") and was extremely vain - but always had to be different and a bit eccentric. Hated Scotland with a passion and his accent became American within a few months of being there; even now, at the rare ocassion he does speak, his accent is still twangy American. Joined the US Navy where he got diagnosed, thrown out, deported back to Scotland. I never heard anyone talk about my dad having a girlfriend, except for one that he got a tattoo on his arm of her name (I still smirk when I think of that and see it as a two fingers to my mum that he never got it removed ). His absolute hero was Elvis and he did everything to look like him in his heyday - the big hair, the sunglasses. My mother's family frequently made jokes about him, nasty ones... stuff about how he 'always seemed a bit gay' and criticising everything about him. Usually in front of me. Apparently he didn't give a f*ck about what people thought about him, never did. I don't think he ever really saw me as his and my mum's, more his - he wanted a daughter and decided he was going to call her Lynn (after his sister's friend - maybe an ex of his? I don't know), but my mum wasn't having that and said the registry office 'messed up' so I got registered as Lorna instead. He used to take me out for walks all the time, always fed me, used to spend hours talking to me and hated me being out of his sight. And I will say this, my dad has only ever shouted at me in an 'episode' once - he's tried to talk to me in recent years (my dad is practically mute - he just refuses to look at people and talk to them, although it used to freak me out because my dad always stared at me) but I find it too difficult because he can only talk about his world and doesn't understand mine. I showed him photos of my old flat and there was one of my old cat and he brightened up immediately - he always loved cats and my mum took his away because she prefers dogs - asking me about my cat etc.

I don't know if my dad was autistic growing up and he was just rejected as being eccentric - he had 2 massive strokes at 32 (when I was about 2). To me it sometimes seems like maybe the damage caused by his strokes has kinda 'trapped' him in his own little world?

B"H

I have been reading some good posts.  Let me tell you a bit about my own experience, before I log off.  I've been spending a bit too much time here, and I probably want to cut down a bit.  Before I was diagnosed, I was self-diagnosed, with an unofficial "Aspie" score of 173/200, and a 48/200 NT score.  I think that it's a bit unfair; it should have been a 27/200 NT score!  No?  In any case, I was self-diagnosed, before I got an official diagnosis.  How would I have known to get an official diagnosis if I had not had the good sense to unofficially diagnose myself? Ask yourselves that.

I think that the "Diagnosis Only" folks can perhaps have a forum within AFF, just as parents and young people do.  This would give them--or us---a chance to network.  I also have experience on the other end of things that could be shared, having been a Paraprofessional/Caretaker.  Maybe there could be a forum for caretakers who want to learn more about Neuro-diversity.  

As a caretaker, I experienced Autism as something that frightened me, more so than it would have frightened a NT.  Immediately, something in me knew that I was repressing something.  I once shadowed an autistic young man, and saw him interact.  He once told me that the President of the Student Council would throw balls at other kids.  I looked at the President, and he seemed like a nice kid.  However, I know that people with power can be indoctrinated in to a belief structure that justifies certain actions, a process that starts early.  I felt a sense of sympathetic solidarity with the young man that I could not quite understand at the time.  

Why do I mention this?  If we create wall, DX versus non-DX, we are created a boundary and working against Neuro-diversity.  That does not mean that I do not support a forum within AFF for people with a Diagnosis.  However, remember that Asperger is not necessarily always a Syndrome in need of a diagnosis; it is a way of life, and a privilege.  I have deconstructed the term "Asperger" in my bio, but I still use it since it is the accepted term.

All the best,

There is also difficulty with taking another's perspective (they're calling it 'mind reading' these days).  Its just plain hard to figure out what's going on in another's mind, Batman55.  At least you speak out when you worry about this.  That is brave and wonderful.

Anyone who is interested in health insurance & autism issues in the US can read:
http://www.patientcenters.com/autism/new...rance.html

I do know all about demanding parents, but both aba & floortime have efficacy data, and are not considered expiremental or expensive.  I do use aba for specific behaviors (initial PECs or a maintaining seat in classroom setting, but floortime is wonderful for ealy intervention.  People who limit early intervention in autism will burn in hell.

I do!!  

When I have to peel a child off the cieling....

I invite them into my lap, wrap them in my arms, and rock them.  Usually within 15 minutes they are engaged in the language activity.  

If they don't want to sit, then I get out my box of squeegies, softies, and beach balls.  

I have also been known to get out my collection of glow in the dark creatures and turn the lights down real low.

The kids will let you know what they need if you know how to listen.

I have a presentation set up with OT that I have made mandatory for paras of all the kids I work with so they can do this stuff for 3 - 5 minutes every hour or two all day so I can devote the entire session to language.

...and demeaning.  Elizabeth Kubler Ross wrote about grief.  Parents of kids who are labeld 'disabled' go through, and get stuck in, various stages.  

Many of these parents are also dealing with similar challenges as their kid's.  It is difficult for me, as a professional in the field, to go to my kid's meetings.  I am not proud of many of my colleagues.  The parents need to know that they send their kids off for 6 hours a day to people who love them and will meet their needs.

When this is broken, they sue and the whole "disability" industry suffers.  NCLB does address many of these concerns in the sschool end- and is a good thing, but insurance needs to be brought to heel as well.

For medical conditions, the price is high.  So for treatments that might "cure" autism, I imagine the price is high.  

If autism is thought of as a learning disability, particularly one of communication, then it is not too bad.  The problem is in finding "highly qualified" people who can intevene.

Right now, medicaid will reimberse schools for Speech language intervention if the parents sign concent for this reimbersement.  I don't think the insurance industry contributes even one penny for in-school services (too busy lining their pockets along with the oil industry).

Schools are the best place - if you have a descent one nearby - because communication is best taught where the child will be using it (classroom & home).  You can teach descrete skills in pullout, but they blossom when used with their friends in the classroom setting.

Early intervention makes such a HUGE difference, so much of the treatment takes place in the preschool classroom.

You do not understand research if you are asking for "that prove this beyond question???"

Are you asking for evidence that early intervention cures autism?  You won't find it.  

Are you asking for evidence that early intervention can help with aspects of autism that interfere with independence, then here is some information to get to get you started on your investigation.

Early Intervention (B)
Early intervention is likely to be beneficial in fostering the
development of communication skills in children with ASD.
Rationale
Early intervention ensures appropriate management decisions
are made at the optimum time for skills development.
Evidence
■ Rogers SJ (1996) Evidence Level IIa
■ Salt J, Shemilt J, Sellars V, Boyd S, Coulson T & McCool S
(2002) Evidence Level IIa
■ Jordan R, Jones G & Murray D (1998) Evidence Level IV
■ Salt J, Sellars V, Shemilt J, Boyd S, Coulson T & McCool S
(2001) Evidence Level IV

http://www.rcslt.org/resources/RCSLT_Cli...elines.pdf

And we can disagree until the cows come home without a cross word.  

I wonder if you are assuming ABA.  I am much more of an engagement with a sprinkle of ABA for specific behaviors that are barriers to communicating and learning and not solved by visual support systems & a good sensory diet.  

However, ABA has been demonstrated to have usefulness as a sole intervention and taking data is a breeze.  I also work my hiney off to empower parents to be co-therapists.  Get a parent on board, and the progress can be very exciting.

I am in favor of early intervention b/c the brain has more plasticity and so organic changes are easier to influence and are greater.  “acquisition of a normal language is guaranteed for children up to the age of six, is steadily compromised from then until shortly after puberty, and is rare thereafter” (Pinker 1994, p. 293).

Communication is essential for a person to take control of their own lives, and language comes easier to a very young child than any other time in the life span.  

Language acquisition can be verbal, sign, PECS, or voice output devise.

One of the reasons I am attracted to "engagement" intervention is that 'play is a child's' work.  So my kids do play with me frequently, but you hit paydirt when you get kids with communication challenges interaction frequently with a variety of peers with a variety of strengths.  Then the adults just need to make sure that a way to communicate is available AND the child is not in a self contained classroom with a bunch of adults and limited peer interactions.

I walked in on a meeting today (I had one right before so I was late).  They were going to pull a kindy out of a regular ed classroom because the teacher couldn't tollerate the melt downs.  

By the time I left, the child was back in classroom full-time, had visual schedules etc, whole class sensory breaks at least every 60 minutes  (teacher doing sensory activities as part of regular classroom transitions), and teacher & paras participating in professional development in autism.

I am sorry Batman55, that was rude of me.  I have studied this for years and that does make me tend to intellectualize this information.  My study of this material makes me more educated - not smarter, by a long shot.  I have included links to more information in case you also have interest in studying these areas.  My absolute fav is the neuroscience for kids link.  Terrific info and great visuals.  

ABA = Applied Behavior Analysis and is a Behavior Modification Model where teaching is initiated by adults, is highly structured, and intensive in nature (20-40 hours per week)

"One widespread result of autism-ABA industry articles of faith is the dismantling of autistic people into series of bizarre and inappropriate behaviours (http://www.sentex.net/~nexus23/naa_aba.html)."

However, I find ABA useful for specific behaviors such as introducing PECS (picture exchange communication system) to a child who is very cut off from others and needs a teacher-controled, highly structured introduction to its utiliation.

Because it is teacher-centered, isolates a specific "autistic" behavior, and is very controled/structure this approach makes it easy to take data, which enhances its popularity to people who feel comforted by having data and wanting to cure a child of autistic behaviors.

Because I believe that communication and social interaction are core to autism and the behaviors are merely symptomatic, I drift more toward engagement strategies.  

These include directly teaching how to use toys and objects imaginitively through lots of practice playing, introducing appropriate activities to replace inappropriate behaviors by giving the child the means to have power over their own life and their environment (i.e PECS communication & schedules instead of trantrums), developing visual cues (such as hand signals or pictures) to reduce verbal and physical prompting, scheduling sensory activities proactively, and finding ways to make tasks more meaningful and motivating to the child with autism.  

This is child-centered (i.e. what works well with an individule) and resembles what their peers are doing.  I think you would find this meets your criterias for allowing a child to just be a kid, while allowing him or her to learn the skills needed to become autonomous.  

Engagement enhances incidental learning (learning things in addition to what is targeted) and flexibility.  Any peer can be encorporated BECAUSE IT IS CHILD-CENTERED (and other kids also WANT to be included because its fun), so it is great for inclusion.  It is much harder to take data b/c the clinician is also very engaged, so frequently at the end of the session, I don't have much to show for it, so goals are written for measurment by classroom data, which is taken there during observation. http://www.nasponline.org/resources/hand...4_blue.pdf)

Plasticity: "...the lifelong ability of the brain to reorganize neural pathways based on new experiences. As we learn, we acquire new knowledge and skills through instruction or experience. In order to learn or memorize a fact or skill, there must be persistent functional changes in the brain that represent the new knowledge. The ability of the brain  to change with learning is what is known as neuroplasticity (http://faculty.washington.edu/chudler/plast.html)."

I absolutely hope that you will keep asking questions and arguing points that do not ring true to you.

Helen Keller was still within the "window of opportunity" for language acquisition AND she had been exposed to language (and vision) until the age of 19 months.

Additionally, the brain remains "plastic" thoroughout the lifespan.  During brain growth & maturation (until the age of 21) plasticity is most productive.

However, I do agree that interpreting research requires high levels of expertise, and that is a good reason to seek out peer reviewed articles.

I always figure out where the child "is".  I work from there.  For some kids, they talk on a real phone while I answer on a play phone.  we move from there until I can use a plastic spoon or my hand to be a phone.  Its the symbolism, humor, and flexibility of pretend play that seems to support language growth.  

The hardestr thing is getting engagement going.  It is most typical that a child new to intervention will tune everyone out on focus on some small inanimate thing.

As someone who hated to play dolls and who couldn't tolerate things not being in proper size perspective, I would not dream of inforcing gender roles.

The item that differintiates autism from asperger is the lack of a language delay, but aspie children nevertheless, have difficuties with social and abstract language. Its the symbolism, humor, and flexibility of pretend play that seems to support language growth in the young child.

I want a child to take control of its own world.  Communication is the best way I see to do it.  language is a very complex cognitive skill.  I don't know how anyone does it!! It is probably the most complex thing we do in our lives.  As an aspie kid, I've spent a life time getting good at language.  The kids I work with are a big assest to me.  I learn all the time!!