"Oh great..." you may be saying, if you are autistic. "Yet another crackpot 'expert' wanting to impose their cure and CAN theories on us!"
Let me introduce myself before I go further.
I am 31 and was diagnosed as "high functioning autistic" in 1978 when I was about 2.5.
Back then, high functioning autism was ungeard of and at first I was just diagnosed as being a "retarded" and "Manipulative" child who should be locked up in an institution because it would not be "fair to my normal brother to be raised with a child like" me. My parents, recently immigrated from England, would not take that diagnosis since more was known about the autistic spectrum in England at the time. In fact, they were ready to just go back to England and raise my brother and I there because of this.
There was an autism society starting up in the city I was raised in, and my parents got the name and phone number of the woman who was running it. This place specialized in what is now called ABA (Lovaas' version of it) and would not treat anyone under the age of 6. (Yes, you read it right)
They took me in however, and did their treatment on me anyway. My mother also lived at this institution because she was worried about mistreatment and because she wanted to learn how to do this at home.
I was out of there 3 months later, doing far better than I did before I went in.
Was it because this ABA was successful? Looking at what is now standard since then, it is now believed that the earlier one receives treatment of this type, the better off the child does. Now it's rare for kids *over* the age of 6 to be accepted into funded programs!
So, I was talking, doing things on my own and using words that university professors could probably relate to, but kids my own age could not. I went from non-verbal to speaking at a high school level within three months.
Was it because ABA was successful? One could say yes, and I could very well be the poster child for ABA and related therapies.
But was it successful? I'm on the fence, but I will say that I do not believe my success was because of ABA and I'll tell you why.
* I was only in the program for three months. Hardly enough time to either prove or disprove the theory. I suspect it may have been the kick in the ass I needed, but I am fortunate that it was not prolonged. I believe I would have been worse off than I am now had this continued. (More on this later)
* My mother had problems with a lot of what they were doing, so I did not receive the full treatment.
For instance, they would line all of the inmates up each night for sedatives to help them sleep. My parents are dead against drug therapy, so I didn't get any medications and was the only child not "put out" at night.
Another time, they sat me in a room and threw balls at me for an hour. WHy? They felt I had a fear of round objects and things coming at me.
What was really happening on my end? I wasn't afraid of balls or round objects. I have astygmatism in both eyes (so does my dad) - if you don't know what that is, it is basically a warping of the lens in the eye, easily corrected with glasses or even laser surgery.
The lens in both of my eyes is warped in such a way that things a few feet away look like they are coming right at me. Naturally, a round object would be a little freaky to me and I would avoid it so as not to hit it.
My depth perception was also way off back then. If there were two colours of carpet on a floor, the little space in between looked like a chasm to my uncorrected eyes. (This meant that I was afraid to cross between those two colours because I thought there was a 50 foot drop in between - a natural fear for anyone wanting to cross an unbridged 50 foot chasm!)
I didn't wear glasses until I was 6, so one can imagine how traumatic it would be for a 3 year old with horrible depth perception due to bilateral astygmatism to have balls thrown at her! Had they just gotten my eyes tested and got glasses for me then, this probably wouldn't have had to happen and I might not still have a phobia about things, particularly balls, being thrown around me. (Needless to say, I don't play baseball)
To this day, I know the prescription for my glasses needs to be updated when the roof of the parking garage looks like it's going to hit the roof of my car as I drive in!
Then there was the food...
On my mother's side of the family, we are not-so-blessed with things like irritable bowel syndrome (not known about back in 1978) and gastroesophageal reflux, of which I have both. Couple those with the hypersensitivity that comes with my autism and you get a lovely combination of both and a very finicky digestive system!
For as long as I can remember, I've had problems with severe constipation, blood in the stools and reflux. Did anyone ever treat this? No.
I am also lactose intolerant and allergic to caffeine and soy. Because of the hyperacidity in my stomach, I won't eat things like tomatoes and citrus fruits.
This was seen as a "behavioural" problem by these ABA therapists and I was often forcefed and consequently sick. I have a severe phobia of sickness to this day!
* I have an extremely strong will and I remember my mother telling me that if I would only just speak, they'd leave me alone. Was that all they wanted? Well, why didn't they just *say* so? I spoke...at a high school level, and thus they thought I was cured! Yay ABA...not.
After that, my mother hired a couple of college psychology students to assist me night and day. There was a guy who stayed with me at night and a girl who visited me at daycare every afternoon.
I don't remember much of the guy, but I guess he helped keep me calm at night. He wasn't around long enough for me to remember him. (He must have done well, then!)
The girl used to come every day while the kids in the daycare (for normal kids) would have naptime. If I slept during the day, there was no way in heck I was going to be sleeping at night!
She would take me out to the businesses in the area, such as the doctors' offices, dentists, malls, shops, fire halls, etc. This was probably the best "social skills" education I could get since I did not learn that in the institution. (I learned how to survive in an institituion, which has nothing to do with real social skills)
This girl would show me how to use money, how to sit quietly at the doctors' office, how to say hello and browse quitly through the shops. We'd go to restaurants and she'd show me how to order food and behave nicely in such a setting.
If ABA was done at home, my parents didn't make it very known. They raised me just as strictly and as fairly as they raised my "normal" brother. I saw no difference in how I was raised compared to him and I appreciated it.
After a year of this, I was ready to enter regular school which would start the longest and most gruelling of my social skills training!
I was an intelligent kid, with an IQ scored at 134 and the reading/speaking level of a high school student. One would not have thought this to see my miserable grades in the first ten years of my life in school!
I then got the "how to deal with other kids" in the worst and best possible way. It was the best/worst for a few reasons:
1. I got to see kids at their cruellest - I was different, acted differently and actually wanted to be at school because I really do love academics and I love to learn. I could also read and write at a high school level in kindergarten. Not a good mix for the "ordinaries" who react like many pack animals like human beings do when someone is different: try to destroy it.
2. I got to see adults at their worst. Like their younger pack-animal counterparts, some teachers had it out for me because they feared me. (One teacher who was particularly nasty to me admitted this to my mother years later)
3. I got experience the joys of having to work twice as hard as anyone else to get good grades in school because pretending to be normal and trying to fend off bullies in every direction requires more thought and stamina.
This may sound absolutely wretched, but I am thankful for the following reasons:
1. I became a strong person and I had no rosy-eyed fantasies about people after that. I was taught in ABA to trust and like people. In "real life", I learned that people are mean, nasty and intolerant for the most part. Deal with it and you'll do fine. I learned to determine who my allies were and utilize them accordingly. I learned who my enemies were and learned to fight them accordingly. It took me 10 years to master the art of verbal self defence, but most kids got the hint when I could not be beat in a physical fight.
2. I learned to win without fighting. In my early years of school, I resorted to physical means to defend myself. I wasn't good at insulting them back so I'd punch them out...any age, any size...I'd always win! My inability to feel external pain, coupled with my incredible physical strength and anger made me unstoppable.
3. I developed a very strong sense of justice. Seeing so much injustice around me and already having a high sense of justice because I'm autistic and am not good at political games made me unstoppable as well. I also learned to curb my emotions as any abused person does. I would never throw the first punch and would never allow them to see weakness on my part.
4. I learned that normal people really get freaked out by lack of emotion. Eventually fights stopped being physical because I mastered "the blank stare". I would simply look someone in the eye and when their gaze locked with mine, I'd make a sudden move that would scare them enough to leave me alone. No punches thrown, no one hurt...I win. People learned very quickly that it was probably a good thing that I did not maintain eye contact. I only do it when I'm mad enough and I go into the blank stare stage or I really, really want something. If I looked at them, they knew they'd gone too far and there was no turning back. You see, it's very hard to maintain eye contact since eyes are the windows to the soul...I already sense people's emotions very strongly in the air around them that looking in the eyes just intensifies it for me. I am very sensitive to the air around people and how they exude emotion. I don't need to see facial expression, actions, voice tone and that feeling oozing from them is more than enough for me.
I cannot listen and look one in the eye at the same time...or else I miss what they say because I'm too busy analysing their emotions and such. (Eyes are fascinating and say so much) I remember in school, we had a guest teacher who was doing a lecture on some complex topic (job searches I think) and I was doodling and not looking at her. She got really mad and I said "Trust me...I heard everything you said." She said "Prove it". I repeated her lecture verbatim and she left me alone (thank goodness for my photographic memory!). I said "If I'd looked at you, I would have missed all that."
5. I learned strength of character. It took awhile of hell but by the time I hit grade 11, I was told that I was one of the strongest and most well rounded people my teachers and peers had met. The first 11 years had been trial and error - I tried being tough, being nicey-nice, a push over, fun loving and then quiet and eloquent. Quiet, strong and eloquent worked wonders.
At 13, I wanted money and I wanted to make my own money; not depending on my parents. I wanted a job, so I went out and got one. I worked at a used bookstore and was so proud to tell people "I'm going to work this morning".
I still work - 18 years later.
Now, prior to this I had no idea I was autistic. My parents never told me until I was 13. That's why I wanted the job. No way in hell was I going to be spooging off my parents or welfare forever!
I got obsessed with psychology and bought all of the university level textbooks I could on the subject. I devoured them in under three months and found myself applying what I learned to every day life.
In grade 11, my parents heard of what is called Alternative High School in Calgary. It's not for mentally delayed people, but it is for the intelligent kids that just couldn't make it in the mainstream because they were too smart, too weird, too artsy, etc. http://schools.cbe.ab.ca/b863/home.htm
This school would not allow students to razz each other because they'd all come from that situation. We took full responsibility for our grades, right down to having to account for every one of the 125 hours we needed to get credit for a course. We were like a tribe and we called ourselves "the Alternative Folk".
We engaged in social justice activities, volunteered for charity, worked in our communities and learned how to live in the world as an active member of society. This is exactly what I needed! I went to conferences, won the Youth Leadership Award in 1993 because I ran the school store by myself.
I was in my element and loving it!
My grades skyrocketed and I learned something else: I don't need to try at academics at all. I got honour roll without even trying for three years straight. Why? Because I was no longer stressed out. I found my comfort zone and thrived!
I graduated high school at the age of 17 with honours. When I was 19, I went to college and graduated that as valedictorian with a 99% average. The highest to ever come out of that college.
"So...you want to be one of those autistic 'autism experts"! Sellout!" You might be thinking now.
Please give me another moment to explain the background, my motive and what I hope to do with all of this.
Looking at my own past, one might say the ABA was successful. I don't believe it was.
Let me tell you about what happened when I moved out and lived on my own, which should explain why I am actually *against* ABA/IBI/Lovaas style treatments:
Sure, I was all ready. I had a college education with a 4.0 GPA to boot, I could drive, I had been working since I was 13, so I had work. I had even lived with a few roommates and on my own.
Just before my 24th birthday, something happened to me that seems to happen to a lot of us in our early to mid twenties: the Meltdown from Hell. And, yes, I'm going to use the word "Hell" because that is exactly what it was like and I'm not sugar coating it for you.
It had been triggered by an experience at an "alternative healing" clinic. They had done some hypnosis and planted some sort of horrible memory into my mind (This happened to three other women, I'd find out later).
Remember my mentioning digestive problems and GERD that went untreated because it was all "behavioural"?
Well, it came back to bite me on the ass and let me know that it is most certainly not "behavioural"! (Oh yes…I forgot to mention, I will also use the word “ass” from time to time. You have been warned…)
All of a sudden, I could not even drink water because the reflux and pain was so bad. I had this taste in the back of my throat like I was drinking acid. Naturally, I could not eat either.
I dropped about 60 pounds in a matter of weeks...not healthy!
Because of this, all of those little autistic "behaviours" I had been hiding so well because ABA just teaches a person to pretend to be normal, came crawling out of the woodwork (kinda like cockroaches when company comes over…), showing me exactly why autistic behaviours happen!
I was having panic attacks 5 or 6 times a day, which would last for about 4 hours and leave me paralyzed from the waist up (that's what happens when you hyperventilate for too long - you seize up). Lots of fun.
When I could move, I was flapping, rocking and pacing around because it brought me comfort. I was scratching myself to divert the pain and was a right old mess! I creamed, cried, howled and could not speak very well anymore.
Fortunately for me, I was hiding my autism so well that no one actually knew about it at the hospital I worked at, so it was quite a transformation for them to behold and they didn't know what to do! They didn't believe me when I told them because I "seemed so normal".
It was all an act, my dears!
(I think I should get an Oscar for 21 years of my "pretending to be normal" perfomance. It was truly a feat of skill which came with a heavy price)
Two days before my 24th birthday, I was in the emergency ward, half dead, unable to move and seriously dehydrated. It was a wonder I had survived!
My boss at the time, a neurologist, referred me to a stomach specialist, which is something that perhaps should have been done when I was 5 or younger! He tried his best, but he discovered another thing about me: I'm really sensitive to medications and have some bizarre reactions. They tried to sedate me to do an endoscopy and I blacked out (after taking a swipe at the poor guy) and had to be given the antidote or I might not have woken up.
I was put on prepulsid (now pulled off the market) and my system was moving again. I could drink water again and take vitamins. The vitamins restored my depleted system and I began to feel better emotionally.
I did some research (Thanks to my obsession with medicine and psychology) and found a new drug for GERD that might work and had very few side effects. I was put on it and the GERD was finally, after 24 years, under control! I had to come off the prepulsid because the combination of the two rendered me unable to swallow.
Apparently, my esophagus had just about been burned through and it took a few years before I could eat anything more zippy than bland soup, bread and rice.
All this crap because of the following:
* I had ignored my limits. I didn't believe I was autistic or that I had been cured and pushed myself way too far.
* My medical needs had been grossly ignored in my childhood, blithely put off because it was "all in my head". (Yeah, right) That just about killed me.
My mother finally realizes my dietary needs (which I had to determine on my own with the help of a dietician) and finally makes food I can eat when I go over there for supper.
That took nearly 30 years of trying to tell her, folks, which proves that autistics are not listened to even if they *can* talk!
* I was never given the training or education I *really* needed - how to cope with the differences in my perception and how to relax myself enough to clear my mind so I could sleep at night.
I spent a lot of time when I was 24 working on myself.
I taught myself routines at night which now automatically "turn off the racing thoughts" and put me in a state of relaxation enough for sleep. No one ever taught me that very simple little skill.
I'm still working on dealing with my dietary changes that have to happen when my body decides it all of a sudden doesn't like what I'm eating after 2 years of being ok with it! (I know I'm not alone on this one either...I've heard of many other autistics needing to change their diets regularly because of this)
As for the panic attacks, I get them when things are wrong or I'm pushing myself too far. When things are out of whack, they happen. When I get it all sorted out, they stop.
No meds for me - remember what happened at the hospital with the tranquilizer. Apparently, my doctor knew of my weird reactions and decided that a baby's dose of the weakest thing he could find would help. It didn't and he got a black eye and I don't remember any of it.
I hauled my own ass out of that meltdown and realized some very simple facts about myself and autism:
Autism does not go away, it cannot be cured, it cannot be "trained out". I'm in it for life.
Autism can be a royal pain at times when my hypersensitivity gets in the way of things, but I'm hardly suffering compared to folks with cancer, Huntington's Disease or any number of nasty things out there!
Autism has been blessing in so many ways: I have a photographic memory, the ability to learn quickly and effectively, the ability to see things objectively, the ability to handle emergency situations better than most, the ability to rationalize emotionally charged things, the ability to handle pain that most folks would need medications for and (this is true) les wrinkles because I'm not prone to expressing emotion!
Autism is a part of my life, but it should not prevent me from living life to my standards
I have an extremely strong will and, because of my past, I will not accept being abused by anyone again
Autism is not a death sentence - denying it and pretending to be normal almost was.
I hope to take my obsession with psychology and medicine to the max with a university degree where I hope to use another obsession of mine: advocating for autism and finding ways to help autistic people achieve their own desires and navigate their way through this world with confidence and the ability to cope on their own with the tools they can use to empower themselves.
Why do I have such a problem with ABA/IBI/Lovaas, etc. and why will I never, ever advocate it, despite it being so “helpful” to me?
I would not force a toddler to work a job for 40 hours a week. I’m sure most folks out there would also not so this to a three year old. Why, then, is this ok for autistic toddlers?? ABA/IBI involves this sort of time frame of “therapy” per week. (Hence why IBI is called “Intense Behavioural Intervention”, folks)
“But IBI/ABA is fun and it’s not work!” Looking at all of the jobs I’ve had since I was 13 (ranging from manual labour to office work), not one of those was as difficult to endure as ABA was! I’d work 60 hours a week at my two jobs before I’d ever subject myself to 40 hours of that again. (And I’m an adult!)
The wrong message is given to autistic children: “You are defective and your internal problems mean nothing. Just act normal and no one gets hurt.” Of course, this is not actually being said to your child, but the sentiment is loud and clear. Most autistic behaviours are coping mechanisms to handle other things that are going on internally. By forcing a child to not use these behaviours to cope and not giving feasible alternatives, you are sending the message that they are not allowed to cope.
Hardwiring behaviour only works for so long – ABA works on the very simple concept of behaviour modification used in basic parenting, all the way up to training one’s dog or deprogramming a person.
Behaviour modification is simplistic and can be used on non verbal subjects (i.e.: animals and, in this case, autistic children). The use of reinforcements (rewards) and/or aversives (punishments) is an effective way of hardwiring desired behaviours since it focuses on the very basic functions. It gets “hardwired” into the subject’s subconscious and the autonomic reactions.
That is why ABA “works”. You can use behaviour modification on almost any animal or person to get them to do what you want them to. The instinct is being hardwired.
However, since this is happening with children, they are learning proper “child” behaviours, which, I’m sorry, just don’t cut it upon reaching adulthood! This type of “hardwiring” is not flexible nor intuitive. This will only serve the subject for so long until life changes.
This is not a cure. Some folks have been saying that there is a possibility that it can “cure” autism by at least 80 percent. No. You’re just hardwiring your child to behave normally…something that will come back and bite him on the ass one day.
ABA DOES NOT EQUAL CURE!
Neither does anything else for that matter, so its best to just face the fact: autism is not curable. Only crackpots say it is. (Free advice)
The price tag – I’ve looked at the annual costs for this stuff and I’m disgusted. $40,000 – 80,000.oo a year?? To do what anyone who knows how to train a dog can do?? To do what any parent raising their children do on a daily basis? Come on folks. There are better ways to use your money…like *feeding* your children for instance! I wish I made that much in a year! (Perhaps I’m in the wrong profession??)
It is not “medically necessary”. Your child is not going to die if he or she does not get ABA funded by the government! – Come on, folks. No two drugs work the same for epileptics, and no two therapies work the same for autistic people. That is common sense.
The testimonials of others. Check out these sites to learn more about how “beneficial” ABA has been for these folks:
http://users.1st.net/cibra/testimonyindex.htm - Lots and lots of stories about how ABA has not been benefited. To be fair, this didn’t work for them. It may not be the same for your child, but these children were harmed because this was not right for them. See my previous point about this not being medically necessary.
http://www.sentex.net/~nexus23/naadev.html - Michelle Dawson’s well-written article about ABA. She’s been blasted by a lot of parents and professionals, but Michelle’s comes from an angle that none of these parents’ do: She is autistic and she’s got a better idea about the effects of ABA than any of these non-autistic folks ever will. This is also well-researched and backed up with some decent literature. Michelle is a scientist who does a lot of work on this subject.
http://www.autistics.org/library/behavioral.html - Everything I need to know, I learned from my Behavioural Therapist – This is not a nice article, but again, it is written by an autistic who has been through it. By. Camille Spiltwater and her 6 year old autistic son, Millford.
http://www.autistics.org/library/fakingnt.html - Faking NT Versus Being Yourself. Another article written by an autistic person who underwent ABA. (By an anonymous autistic)
http://www.autistics.org/library/letspretend.html- Let’s pretend. A short article on pretending to be normal and how much it does not help. By. Patti Shepard
http://www.autistics.org/library/dotous.html - This is what your Treatments do to us. By A.M. Baggs Another point of view article.
http://www.autistics.org/library/mother.html - A letter from a mother about the whole way autism is looked at today.
They say that ABA is done to get autistic people to talk. May of them are (see above).
So…why is no one listening??
Now, there are many, many parents who say that ABA works.
You know what? I’m a fair person who does like to hear both sides of the story.
Tell you what: When your child, who is doing so very well with ABA, reaches the age of 27 and is living on her/his own, doing very well* as an adult and has not yet had the “meltdown from Hell” because s/he “Cannot pretend to be normal anymore”, please have him contact me and show me how well s/he is doing. This will be very vital to my research and I would appreciate it.
One rule: You are not allowed to prompt him/her just to make your point! This has to be true, from the heart and real.
* By doing well, I mean not experiencing feelings of hatred toward oneself, no suicidal thoughts, actually working, paying his/her own bills, perhaps engaged in some sort of romantic relationship (not required since many can be quite happy living one’s own!) and/or feeling very good about his/her direction in life. In other words…as happy as one can be when life is going well.
Sound fair? Good. Let’s move on…
If I could change things about the way autism is looked at, treated, etc. , what would I change?
Take it out of the DSM-IV or at least add the physical problems that can accompany it there. So many common physical problems are ignored by medical professionals because of this very simple fact that it is seen as a "psychiatric disorder" and not something like the neurological thing that it is. This "behaviours" that are the qualifying factors in the DSM-IV, in my opinion, are only reactions to symptoms hardly ever mentioned in medical literature, nor addressed properly. There are a lot of other medical things that get ignored.
Drug treatments - There are actually no drugs out there made "primarily" for autism. Meaning, there is no specific drug treatment for autism like there is for epilepsy. Because of point number 1 above, doctors are prescribing very dangerous psychotropic drugs to autistic children and adults instead. I do not believe these drugs do anything to address the actual problems that may be causing the behaviours or obsessions. (When I'm feeling good, for example, I really do not have much need for obsessions at all...which is what most of these drugs are prescribed for) If you need another good reason to get children off the drugs, check out this site: http://www.autistics.org/library/meds
ABA/IBI being considered medically necessary and the amount of time put in - You already know what I think about this. Some kids are being subjected to 50 hours of this a week. I do not even put that much time in at work...and I have 2 jobs!
"Fun" or not, this is an insane way to treat any toddler! Given the potential long-term damage of this (even if short term benefit is seen – this is something I hope to study in a proper scientific manner one day), I do not want to see this become medically necessary or the only treatment available.
Autistic people area more aware than you think – Go online sometime and read what Autistic people are saying…and then listen to them. They’re pretty blunt about it and are saying it in plain English. You’ll not get a straighter answer about what would be good anywhere else!
Advocate in the proper context - I see the advocates for autism often being listed as the ones trying to get the ABA/IBI instated as "the" treatment for autism. I hardly call these folks advocates for autism.
They are advocates for themselves and their views of how autism should be treated, not advocates for our benefit!
This does not make them any worse or better than me, but let’s call a spade a spade, shall we?
We need more people *really* advocating for the rights, voices and lives of autistic people of all ages. That is something seriously lacking and this is where I want to get active, by starting some sort of group of advocates for the "right" reasons for the "right" people (us as autistics).
If we want to gripe, whine and complain about “services” and “medically necessary services”, let’s have a look at what those should be:
* A complete individual assessment of the autistic person and what his/her needs are. As many of us know, autism is not a static phenomenon. No two autistics experience life the same, have the same abilities, experience the same difficulties.
Naturally, no one treatment or service is going to work, is it? Sound simple? Yep. Does this often happen? Nope.
One autistic child may be very sociable and love people but cannot speak. Perhaps a speech therapist might be all that is needed in this case?
* Perhaps there is an underlying medical condition at work here? In my case it was my poor eyesight and digestive systems that caused a lot of my behaviour and “problems”.
A full physical exam, including an eye test and audiological assessment should be done. All physical symptoms right down to the stools should be mentioned and looked at by the doctor.
* And while we’re on the topic of doctors, let’s get some who actually know what autism is and how to look for the underlying causes without just prescribing some antipsychotic! There have to be some good ones out there…let’s get a list of them!
* And while we’re on the topic of people knowing what autism is all about, how about some educators who actually know about this and can work with autistic people? IEP’s are fine and dandy, but how many teachers actually know a lot about this? I’ve done speeches at schools for teachers and I can tell you that they don’t know a whole lot!
* Psychologists “in the know” would also help.
* Give children the tools they actually *need* – Find out what causes the behaviours and teach the child to cope with these things in a manner that makes him/her feel better and therefore helps him/her to function in society with a feeling of confidence and empowerment. Relaxation skills, meditation, focusing techniques…anything that this person can take control over his/her life situation with and feel good about!
* Realize that kiddies grow up – This may sound incredibly stupid and condescending, but given the amount of adult autistics out there with no services available to them, this is obviously a fact that is missed. Kids grow up, adults have different needs than kids do.
If you do not want to be spending your elder years wondering what the heck is out there for these children, then start making something happen!
Know what services are needed: financial assistance, living assistance, assistance with speech (devices like lightboards, talking keyboards, etc.) , help around the house, counseling on things like budgeting, work and…*gasp!* sex!
I know…we don’t want to think of our little autistics kiddies having sex when they get older, but it happens. They are human beings after all with feelings, desires and the need to find a mate. Some even become parents, so some help in that area would be good too! (i.e.: financial assistance for raising the kids, etc.)
Right now there are NO helpful services for adults. Nadda, zip, zero...none! Do autistic people just fall of the earth when they turn 18? Do they magically get cured and become normal? (If so, then I've really missed on on this and I want to complain to the management about why I wasn't suddenly cured at 18)
Do they die when they become adults? Sadly, many do.
Some at the hands of parents/caregivers...most at their own hands. How would it feel for you to live a life where you've been told you are defective and wrong and not given the help you actually need and just forced to pretend to be normal? Try it for over 20 years and it's bound to affect the ol' self esteem. Where is the qwuality of life in that: to be a highly intelligent person written off as a retard? (Yeah, I'm using the R word, because that's the feeling I got all my life)
* Have better literature on ALL services available and provide funding for the ones that work best for EACH person – There are loads of things out there for autistic children…ABA, FC, Son Rise, speech therapists, occupational therapists, yadda, yadda, yadda. There’s no one treatment.
One day, when I have attained some more academic training and am forging my thesis, I'll be able to put all of this into a better prepared article. Right now, this is just my opinion.
Wow, I’m on a total rant rampage here, so I’ll stop for now!
