eattherich
12-01-2008, 12:49 PM
I have spent the last few years,obsessing over how I might make a difference as an activist.I have spent an even longer amount of time trying to bury my autism.Like a lot of adults,I had improved dramatically.As a child,I had all of the worst characteristics of classic autism,but was not retarded.I did not have a diagnosis of autism,but I DID have diagnoses of "childhood schizophrenia" (http://www.neurodiversity.com/library_bender_1968.html),as autism was called (http://autismnaturalvariation.blogspot.com/2007/08/regressive-autism-was-childhood.html),as late as the early 80s,as well as multiple diagnoses of non verbal learning disabilities.Like a lot of autistics,I had improved dramatically.I was not one of those who lost their diagnosis.I was one who moved "down spectrum",from PDD/Atypical Autism,to Asperger's,and had made an unsuccessful attempt,to deny I was ever autistic.It was not to be.
As you know,I was very sick,for most of last year.I had my third severe bout of meningitis,since I was a baby.After this began to clear up,I had a severe septic blood infection,followed by an unusual recurrence of full-blown rheumatic fever.All one right after the other.After this,I began to regress.As an adult,my autism more or less reverted to where it was when I was about ten years old.My NVLDs,and cognitive function, got a lot worse,too.Autistic regression after severe infections,is well documented in children,but almost unknown in adults who had previously improved.My guess is because so few autistic adults have immune problems like mine,and continue to have infections as severe as those of a baby or toddler all of their lives.It was this regression,that allowed me to get the diagnosis I should have gotten all along.Which is PDD/Atypical Autism,of the more severe stripe.
I have done a lot in the last year and a half or so,to educate myself about what has been going on since the early 90s,as far as autism is concerned,and I was both shocked,and disgusted,by what I found,especially in the area of neurodiversity,and "autism pride".How anybody could be "proud" of a disease,that caused me so much suffering,in the form of immune disease,and profound developmental delays.Why "celebrate" being in diapers until you are nine years old ?What's so great about being old enough to start middle school,and not being able to hold a pencil,tie your shoes,catch a ball,or ride a two wheeler?What joy is there in eloping,wandering away from your school or parents as a child,and coming out of your fog hours later,and panicking,because you have no idea where you are,or how you got there ?Or later,in your teens,or twenties,being arrested for suspicious behavior, and being unable to explain to the cops,who you are,or what you are doing.What's so great about seizures, or a lack of social skills?
It was quite the earth shattering revelation,when I learned that a sizable per centage of those who are labeled autistic,and the majority of those who go around proclaiming neurodiversity,do not have a lot of problems I do.Most have milder forms of Asperger's,which does not even include non social NVLDs,in a lot of cases.It was a shock to me,that what I considered symptoms,were often separate diagnoses,and that the number of autistics with multiple diagnoses,gets smaller and smaller,as you pile more diagnoses on.The numbers I have seen say those with Asperger's outnumber those with classic autism,anywhere from ten or fifteen to one.Those with as many diagnoses as mine,may well be even smaller.So I was just as guilty of framing autism in terms of my own condition,as the high functioning "aspies" I criticize.
I have done a lot of reading on the web in the last week,and I have begun to finally see where the neurodiversity movement is coming from.I can't say I agree with them,but at least I understand them now.And like the man said (http://www.youtube.com/watch?v=gJP8gWLc4IE),that is a start.
Neither side of the debate,either the pro-cure side,or the neurodiversity people are going to go away,and the need for communication,and understanding is greater than it has ever been before.You need someone,who has issues with both sides, and is able to air grievances about each,while bringing along a much needed voice of reason.Someone,perhaps,like me,who has all of the developmental,neurological,and health issues of the worst classic autism,but also has the functioning of someone with Asperger's.
Unfortunately there are no message boards,etc. where people on each side gather for discussion,but there are comment sections of blogs.This (http://www.autismvox.com/28-year-old-womans-death-under-investigation/) is the one that I was involved in last week,and as I say here,it did a lot to widen my horizons,and set wheels in motion in my mind to see what direction I should go in.
You should not have too much difficulty figuring out my posts.
Larentis-rex's initial post here,is typical of the drivel,most autistics write,without any input from anybody more rational.I know,I stop head-banging,hand flapping etc.,when someone has something intelligent to say to me,or when one of my siamese,or my Brittany Spaniel (Best autism assistance dog you could ask for.) comes along.Look at how much more rational he is when he responds to me.Autistics need input from nonautistics all of the time.Even those who are always (http://thiswayoflife.org/blog/?p=242) ranting (http://ballastexistenz.autistics.org/?cat=61) about how awful "neurotypicals" are.Even old line mainstream media (http://www.cbc.ca/national/blog/special_feature/positively_autistic/useful_web_links.html) recognizes the web is a front line in this battle,blogs in particular.It certainly seems like it would accomplish more than protesting some dumb movie (http://www.cnn.com/2008/SHOWBIZ/Movies/08/12/film.tropic.thunder.protest.ap/).
As you know,I was very sick,for most of last year.I had my third severe bout of meningitis,since I was a baby.After this began to clear up,I had a severe septic blood infection,followed by an unusual recurrence of full-blown rheumatic fever.All one right after the other.After this,I began to regress.As an adult,my autism more or less reverted to where it was when I was about ten years old.My NVLDs,and cognitive function, got a lot worse,too.Autistic regression after severe infections,is well documented in children,but almost unknown in adults who had previously improved.My guess is because so few autistic adults have immune problems like mine,and continue to have infections as severe as those of a baby or toddler all of their lives.It was this regression,that allowed me to get the diagnosis I should have gotten all along.Which is PDD/Atypical Autism,of the more severe stripe.
I have done a lot in the last year and a half or so,to educate myself about what has been going on since the early 90s,as far as autism is concerned,and I was both shocked,and disgusted,by what I found,especially in the area of neurodiversity,and "autism pride".How anybody could be "proud" of a disease,that caused me so much suffering,in the form of immune disease,and profound developmental delays.Why "celebrate" being in diapers until you are nine years old ?What's so great about being old enough to start middle school,and not being able to hold a pencil,tie your shoes,catch a ball,or ride a two wheeler?What joy is there in eloping,wandering away from your school or parents as a child,and coming out of your fog hours later,and panicking,because you have no idea where you are,or how you got there ?Or later,in your teens,or twenties,being arrested for suspicious behavior, and being unable to explain to the cops,who you are,or what you are doing.What's so great about seizures, or a lack of social skills?
It was quite the earth shattering revelation,when I learned that a sizable per centage of those who are labeled autistic,and the majority of those who go around proclaiming neurodiversity,do not have a lot of problems I do.Most have milder forms of Asperger's,which does not even include non social NVLDs,in a lot of cases.It was a shock to me,that what I considered symptoms,were often separate diagnoses,and that the number of autistics with multiple diagnoses,gets smaller and smaller,as you pile more diagnoses on.The numbers I have seen say those with Asperger's outnumber those with classic autism,anywhere from ten or fifteen to one.Those with as many diagnoses as mine,may well be even smaller.So I was just as guilty of framing autism in terms of my own condition,as the high functioning "aspies" I criticize.
I have done a lot of reading on the web in the last week,and I have begun to finally see where the neurodiversity movement is coming from.I can't say I agree with them,but at least I understand them now.And like the man said (http://www.youtube.com/watch?v=gJP8gWLc4IE),that is a start.
Neither side of the debate,either the pro-cure side,or the neurodiversity people are going to go away,and the need for communication,and understanding is greater than it has ever been before.You need someone,who has issues with both sides, and is able to air grievances about each,while bringing along a much needed voice of reason.Someone,perhaps,like me,who has all of the developmental,neurological,and health issues of the worst classic autism,but also has the functioning of someone with Asperger's.
Unfortunately there are no message boards,etc. where people on each side gather for discussion,but there are comment sections of blogs.This (http://www.autismvox.com/28-year-old-womans-death-under-investigation/) is the one that I was involved in last week,and as I say here,it did a lot to widen my horizons,and set wheels in motion in my mind to see what direction I should go in.
You should not have too much difficulty figuring out my posts.
Larentis-rex's initial post here,is typical of the drivel,most autistics write,without any input from anybody more rational.I know,I stop head-banging,hand flapping etc.,when someone has something intelligent to say to me,or when one of my siamese,or my Brittany Spaniel (Best autism assistance dog you could ask for.) comes along.Look at how much more rational he is when he responds to me.Autistics need input from nonautistics all of the time.Even those who are always (http://thiswayoflife.org/blog/?p=242) ranting (http://ballastexistenz.autistics.org/?cat=61) about how awful "neurotypicals" are.Even old line mainstream media (http://www.cbc.ca/national/blog/special_feature/positively_autistic/useful_web_links.html) recognizes the web is a front line in this battle,blogs in particular.It certainly seems like it would accomplish more than protesting some dumb movie (http://www.cnn.com/2008/SHOWBIZ/Movies/08/12/film.tropic.thunder.protest.ap/).