Aspies For Freedom

Hi all,

In some recent posts in other threads, I've noticed that there seems to be a feeling among some members that self-diagnosed people should either be excluded from the site, or should not publically call themselves autistic or aspie.

Basically, I wanted to find out if there were good reasons behind this, and if the issues could be addressed in some way without excluding self-DXers.

Feel free to PM me if you're not comfortable airing things in public.

I have actually been dragged somewhat reluctantly into the fold of self-DXers.  If not for the children, I probably would not be here or considering the AS identity at all.  Unless political realities change, I cannot see getting a DX. Too much to lose and the touchy-feely-now-I-know-for-sure thing doesn't mean a thing to me.

I can see a problem with self-DX giving AS a bad rep.  That's why I asked if Lisa Nowak had been diagnosed before of after she was facing criminal charges.  As it turns out she was never diagnosed.  Not sure if it's just media speculation or some one on her defense team suggested AS off the record.  Either way, it creates a situation where mental illness/criminality is equated with autism.  I shudder to think of AS being used for an insanity defense. Can't see how banning all self-DXers from the bulletin boards would address that, though.

hehehe.  My first picture when I read this is of total panic attack frenzied Aspies not able to enter the meeting place because they don't want to face their peers.

I agree.

I'm also "emotionally volatile & take things personally".

Whilst online I find it much easier to take a step back & try to view things differently, or if I can't do this just retreat for a while.

Not very easy to do in real life though!

Hello matthe,

WELCOME

TO AFF!

From a self diagnosed mother of one boy aged 17 diagnosed & one boy 30 undiagnosed AS.

You are wrong. It just means that your insurance won't pay for your autism-related costs if you already had a diagnosed case of autism at the time you signed up for your insurance. You can still sign up for insurance though and they'll still pay for cancer, heart disease, etc etc etc.

Well, yeah, but a) most insurance companies don't pay much for mental health costs anyway, and b) most non-mental health issues they can't talk themselves out off, so for the most part health insurance is still a useful thing to get, whether you're autistic or not.

That said, I'm pretty pissed off with my insurance company, as they're claiming my emergency c-section was not a "complication of pregnancy", but rather a normal pregnancy expense, which is bs. I was going for a home birth but didn't progress beyond 8 cm, so I got transferred to the hospital where the doctor said that I had to have a c-section or the baby would die. I do NOT call that normal.

Oh yeah, I got another lecture from my mother-in-law tonight about how I'm really intelligent and that she doesn't want me to waste my talent. That she understands that my coping skills are less but that I can finish college anyway and get a job with that college degree fulfilling my intellectual abilities.

I would rather do the stuff I'd dreamt of doing, but that doesn't mean that it's something that's a realistic plan for the nearby future. Being an aspie married to an aspie and being a mom of a 4mo baby without any money just does not put me in any position to go and finish college. I don't have the energy or the money. I'm proud of how I'm managing, but other people just *** about me wasting my talent. I doubt that I'm going to be a truck driver for the next 40 years, but for now it seems like a good choice considering my strengths and weaknesses and the needs of me and my family.

Yet another good reason to just keep things to myself.  It is $200/hour for evaluation here in the U.S, at least where we live. $2000 sounds about right.  Multiply that by 4 for our family. And so. I dunno. We'll see. Maybe one at a time starting with the oldest child. Our reality, though, is that their doctors and teachers have absolutely concurred with my assessment. Total respect.  Guess it depends.

And congratulations, jewelie. I imagine diagnosis is a very validating experience.

IF a single integrated treatment plan based on the diagnosis of "autism" were accepted, costs would be reduced. Currently, we must cobble together a strategy while avoiding the word "autism" lest we lose coverage. So we have hypotonia and apraxia and amblyopia and whatever else we need to get the therapies we need. It is a pathetic dance that we do with the insurance company wherein everybody knows what is really going on and nobody can talk about it. Waste of time, waste of paper.

I am pretty comfortable with jargon, and its uses and abuses. I adore the Devil's Dictionary (Ambrose Bierce) and offer this humble imitation:

Intervention -- n., a social strategy whereby coercion is used to cause people of lesser power to stop interacting with their environments in ways that please them and require them to interact in ways that people with greater power deem appropriate.

The important thing is who decides when to intervene and which interventions are appropriate?  I can think of a number of destructive behaviors where I could support "intervention," but I've often witnessed "interventions" for harmless, creative behaviors that are simply too different for the parent or teacher.

And so. A word about plasticity and studies.  

First, generalized findings.  Often people who use the findings of studies have but a rudimentary understanding of the statistical methods from which the conclusions derive.  Averages, correlations, and central tendencies do not make universal truths. A teaching method that is effective for most study participants is also not effective for some study participants. It is important to bear in mind that there is no single strategy that is appropriate for every child, and also that a program's effectiveness can be fluid over time.  

Second, plasticity.  The "truths" we hear thrown around about the plasticity of the human brain are, once again, generalized findings. Helen Keller was about 7 when Anne Sullivan showed up at the farm, and we all know the rest of that story. The exceptions do not make the rule -- that may be the silliest saying ever -- the exceptions show us that it is but a general rule, with a fair bit of wiggle room. If the conditions of the observations are different, it may be quite possible to derive different conclusions. Never underestimate the power of tacit assumptions in any research.

I want to be certain I'm not misunderstood; this is not a criticism of any person, but just pointing that there are always exceptions and wiggle room when the study subjects are human.

I was responding to the quote you included that asserted language acquisition was certain before age 6 and iffy after puberty. I know that one of the ten most influential people a couple of years ago was a guy named Davidson, who showed that the mere act of focused thinking changes the structure of adult brains. I also know that the neuroscientific research that I've looked at over the past 10 years indicates that brains remain plastic throughout life, which is contrary to the conventional wisdom of 15-20 years ago. (I know that you have just asserted this, but it was not apparent in your original post.) We are, however, creatures of habit, so I suspect that the desire to change or effective means for changing patterns of behavior are indicated as adulthood progresses. We tend to find something that works and stick with it.

Anyway, the point is that when we look at generalizations about populations, we cannot easily make assertions about any specific individual. We are looking at probabilities, not certainties.  Too often such nuances are quite lost by the time such "findings" percolate down to the classroom, and we are left with one-size-fits-all strategies. In addition, classrooms are often operating on the "findings" from two decades ago since the percolation process is not a rapid one.  Bureaucracy is not the best agent of change.

The good news is that, in the process of derailing this thread, you and I have engaged our brains and kept a few neurons going that might otherwise have died.

On topic -- I have chosen most-probable diagnoses for all of my spectrum children basically by comparing them with other spectrum children and seeing who they match up with best. Sean had severe speech delays, but taught himself to read and write at age 4. He is a social little guy and was determined to find a way to communicate. I decided HFA for him.  At age 9 his speech is comprehensible, but markedly different.  His academics are just beautiful, though.  He is a very smart young man.  The oldest, with no speech delay and hyperlexic I've decided is AS even though he enjoys palilalia and echolalia.  I've pointed it out to him and he doesn't want to change and I will not make him. The girl will be 8 soon and has a few more challenges than the boys. In addition to speech issues, she has poor muscle tone. She is finally starting to read, write and do addition. Removing her from public school has had a profoundly positive impact on her academics. It is my hope that she is fully at grade level by the time she is 10.  I've read many studies indicating that delayed children often catch up to their peers.  I've decided that she'd probably be diagnosed PDD if we got diagnoses, mostly because she has a friend with that diagnosis and they are like peas in a pod.

I live at home with my two sons.
I no longer work and when I did I never mentioned AS in regard to myself.
I live in an isolated community and generally prefer to isolate myself from those who live nearby.
The only people with whom I have discussed it are members of two forums.

What have I to gain from a self diagnosis apart from finding that the things that have puzzled me all of my life now make a great deal of sense?
That aside I don't have a problem with saying I think I have AS.

Bardwolf, no fight from me. You have just articulated one of the major reasons we have not pursued diagnoses for the kids -- the label that they may not want as they grow older. The label can be empowering and it can also be limiting. I have discussed autism with the oldest and he knows that one of his good friends is an Aspie, but he doesn't identify with it. It will be his choice, not mine.  I asked if he wanted to be tested and he said he did not.  We'll see where things go in the future.

All of the ' self diagnosed ' people here who think that they have Asperger's could very easily have lied and said that they have a diagnosis, on an internet forum it would be difficult to disprove them.

We choose to be honest about ourselves, I have never seen anyone here who thought it was cool or sought attention because of it.

I have seen many who have found answers to questions that have puzzled them for years and I have also seen many people take comfort from the answers to questions that they have posed.

I have also seen many people who have received incorrect diagnoses for medical and psychological conditions from Doctors and Specialists, who as a consequence have received treatment which has made them worse, doctors aren't infallible any more than anyone else.


But having said this I fully accept that nothing is going to change your mind.

Hi lou77! Welcome! How long have you worked at this school? What types of help do you provide? There really is no substitute for OJT.  I think credentialism is way out of hand.  OK -- on topic -- do students require a dx to enroll?