Aspies For Freedom

I guess I just wanted to add, please ask my daughter if she is unhappy with her life now? She is 18. She is about to be awarded her brown belt in Judo. She has a job. We don't see her as disabled. I was wrong, it wasn't 13 years ago. It was 16. I was young, ill-educated. But that doesn't make my emotions at the time wrong. They were natural and understandable. The person who posted before me was right, it wasn't a crime. My girls have a future because we came to understand that autism doesn't have to be who or what they are. It doesn't have to be a disability or a disease.

Disability is a social construction imposed by a culturally based idea of what "normal" is. It isn't real. It's just a definition. My girls don't see themselves as "auties." They are just young women.

Your front page states "We aim to strengthen autism rights, oppose all forms of discrimination against aspies and auties, and work to bring the community together both online and offline." I challenge you to do this by being kinder to people who don't have your experience.

And yes Amy, I do see the irony in asking for empathy from an asperger's website and not getting it.

Janet

She disgusts me!

Shamshir, I hope you are referring to the ex-therapist!

To Janet Boyce:

Firstly, thank you for being so brave, coming back here nearly two years after being misunderstood. I quite understand the mixed emotions - when it was suggested by a teacher that my two youngest "might be somewhat autistic" My reaction was that the woman was mad! How could they be autistic? They were normal as far as I could see; just like me, their father, their older siblings, their grandad...

Reading all about it, and going through the diagnostic process made me see what I had failed to see in my succesful-enough life; that we were all on the spectrum. It explained why I failed to 'get' certain people. And why I had never been able to see anything 'wrong' with children who were introduced to me as Autistic.

Like you, I was in ignorance of the truth about the spectrum. There is little but horror stories in the popular press and on TV. In order to find out the truth, one has to become a detective - and why would anyone with no connection (as they see it) to autism bother to do that?

When 'different' lives are always portrayed as unmitigated disasters, to the extent that you were part/mis-quoted in the original article to give the same effect, it is small wonder that other people who have been equally or even more abused by the system get really upset.

I hope you will be better treated here this time around. I also hope that you will find it in yourself to forgive Amy for her response: she has had it particularly hard, and I understand her reaction, although I know only a little of what she has been through.

As the parent myself of four sons who are probably all on the spectrum, and a daughter who is so much more 'together' than I am even now, as a grandmother, let alone at her age, I understand all the emotions that go through a mother when a potentially devastating condition (not merely autism) is diagnosed in a child. Experience has led me to believe in a far more positive outlook for a diagnosis of autism than certain 'autism charities' would like.

I think that it is up to people such as you, me and another Janet to publicise the truth about spectrum people. That, really, is what this site is about; and if some people are somewhat strident in the defence of an autisitic outlook, that is not surprising given the hysteria on the other side.

I hope you'll stay - we need brave, committed, experienced and compassionate people like you.

Well, Janet, I have to say I feel empathy for your circumstances and experiences. I am a parent of two (possibly 3) autistic sons. I am an aspie myself. I know what can happen when you are presented with more than you're prepared for, and the disappointment you can feel when you realize how ill-equipped you are for the task. It is even more painful to discover how little the world cares, and how little skillful help there is.

However, I feel a great deal more regret for the vulnerability of your son, and so much disdain for those who make their living off of the fear and hopelessness of young parents by telling them that autism is a malfunction in their child that can be fixed - if only the parents believe in them, and they get paid on a regular basis, and only if the child gives up any self-will. It is so wrong for them to make the child the one who needs to be changed in such a major, intensive way, when the vast majority of difficulties autistics suffer come from the inability of the world around them to accept and accommodate a new type of person.

In a way, I was lucky; I couldn't afford ABA - or any other therapy, for that matter. So, while we had to deal with the communication problems, melt-downs, un-understandable frustrations and anger, and perennial bullies (children and teachers) on our own - improvising all the way - we never had to tell our children that they had a major defect. I hate to think how they would have felt after being told that, especially if we couldn't afford the "fix."

Sometimes, I think the "progress" reported from ABA is simply a reflection of children who appreciate the attention, and survive the training. Perhaps the progress is more from love than from science. In any case, I applaud the time and effort you've given your children. That love and effort was more likely responsible for the improvements than the therapy was. Just think how much better things might have been if the therapy had focussed on your feelings of despair and loss. If all that time and money was directed toward helping you and your children to come to appreciate their differences and to maximize the tolerance and accommodation of those surrounding your family.

So, I won't condemn your efforts to do what you thought had to be done. I may have strong reservations against your approach, and I wish you hadn't been convinced, long ago, that autism was hopeless and your children damaged, but I can't fault you for your love.

I am deeply sorry for your loss, and desperately hope the guilty parties are never again able to approach a child of any sort.

I hope you continue to learn and understand the perspectives of autistics and parents who refuse to believe in the need for a "cure" or the need for autistics to be made over. And I also hope those same autistics and parents can embrace you as your enlightenment matures.

I have a feeling that you will someday be as strong an advocate for autistic self-determination as anyone here. I'm looking forward to anything you have to say, or to any questions you might have.

Jeff, it wasn't Janet's son who was killed. Janet has two daughters. As I read the story, many (16?) years ago, when they were little, Janet Boyce's girls were given ABA by Michelle Bott-Graham. Janet was pleased by the intervention, and her daughters are now successful young women.

Years later, Michelle Bott-Graham was injured and became addicted to pain-killers, then heroine. She had her therapy license revoked. In 2004/5 new therapy centre did not do adequate police checks on her, but employed her as a therapist. While a two-year-old named Cameron Hamilton was in her care he was injured and, a week later, died from his injuries.

A local paper interviewed Janet Boyce, but printed only a portion of the interview; thus giving the mistaken impression that Janet was sympathetic only to the therapist, and not to the toddler who died.

Janet Boyce tried to explain her true position back in May 2006 - but was misunderstood yet again. She has bravely stepped up to the mark again, this time I hope we will read her posts more carefully.

I realise that it is only too easy for NT and AS to misunderstand one another; can we please accept that this time the fault was ours? As a young mother sixteen years ago, Janet Boyce knew nothing about autism, only what the diagnosing doctor and the popular press told her. She quoted what her response had been to the diagnosis. She has told us time and again that the view did not hold for long. She is now on OUR side, folks! She could be one of our best advocates. Please don't shout her down again!

OMG! I did misunderstand that aspect of the article. My aspie brain has never seen that kind of "someone who new her before she went mad" inclusion in an article as intuitive. That, plus the apparent closeness of Janet's relationship with the ABA therapist, made me assume something that was just plain incorrect ::blush::

Ok, Janet, let's strike the "deeply sorry for your loss" part. Otherwise, the rest of my post stands.

And, as I ineptly attempted to do above, I'd like to echo Tigger's welcome, and reiterate my hope that Janet will stay and participate in what I consider a very important dialog.

Thank you for your apologies, and welcome back. I really appreciate it.

Just to clarify, I found out my oldest daughter had autism nearly 16 years ago. A year later, my youngest daughter was diagnosed. It was indeed devastating...THEN.

In 1998, six years after that first diagnosis, our lives were in chaos. We had been offered little to no hope or assistance from anyone in the schools, doctors, etc. I spent those six years self-educating myself on autism spectrum disorders, learning to advocate for my children and reading up on all the various theories and research. It was at that time that I came to be referred to Michelle Bott-Graham. No one convinced me that ABA would solve our problems. She never offered a cure. I didn't seek one. In fact, Michelle told me she would do what she could to point us in the right direction, and teach me how to teach my children. All we worked toward was breaking the barrier between me and my children that would allow me to do what every parent should want to do, teach my children how to be as independent as possible in their lives. Self-determination is not necessarily possible if a person cannot care for her own basic needs.

Now today, not only do I advocate for self-determination in my own children, I do it professionally for other individuals with a variety of conditions, including autism spectrum disorders. I made autism and other developmental conditions the subject of my research for my master's degree. My thesis work focused on families, and the negative impact that rigid definitions of what is "normal" can have.

The therapy I now espouse to is not one that tries to cure a child by force, but one that simply finds a place where both parent or trainer and the child can come together to teach skills... such as how to simply communicate what one needs. It is child directed learning, and thus entirely based on a philosophy of self determination. This is what we have always done with my girls. We created an environment in which they felt safe to learn. We bent, rather than requiring that they did. While it is true that some of the ABA therapists employed by Michelle did try to convince us to force the girls to be normal, I never bought into that idea. I remember a few conversations with therapists who wanted us to agree to let them extinguish my daughter's stims completely. I also remember strenuously objecting to the idea that she not have an outlet for her frustration. Everyone stims, even those without spectrum disorders. When I have a bad day, I want to come home, play solitaire, drink a pint, and sit by my fire in my rocking chair. To me that is no less self stimulatory behavior than my daughter staring at her light toys and making "odd" noises. She needed the ability to come home and do what comforted her, what allowed her to release her energy. To have stopped her from doing that would have been cruel.
But I also know that I needed help to be able to communicate with her. So much of the frustration expressed by angry outbursts, aggression and self-injury, came soley from the her inability to make herself understood by my non-autistic brain. What we gained from our time with Michelle before she became an addict was a belief in our ability as a family to deal with our differences, find joy in them, and to get past the hurdles they sometimes presented to us.
Kimberly turned 18 on Sunday. She is graduating from high school in May. She sings in choir. She has a job. She has a boyfriend (who also has autism). She has friends. She likes to dance, listen to music, talk on the phone, watch movies. She loves Judo. She participates in her church youth group. She also cooks very good spaghetti bolonaise, keeps the cleanest bedroom in the house, and is a great role model for her now 16 1/2 year old sister. Kimberly believes in herself because people have taught her she can do anything she wants to if she sets her mind to it. We aren't new to the idea of self determination, and we have never been blind disciples of ABA. However, we have seen the value of having therapy programs to help us learn how to work together as a family.

Thank you again. I am glad to know Amy does not represent everyone's opinions on here. Again, if you would like to view it, our film is on myspacetv.com. Just type "living with autism" in the search window. It will take you right to it.

J

I recently turned 18 too. I have a brown belt in tae kwon do. Things were kind of unusual for me. Since I scored well on tests at school, the fact that I frequently neglected my work (often due to not understanding instructions) and instead sorted beads and lined up blocks in first grade or would otherwise just stare at a wall didn't tip anyone off. Even though I never spoke two words in the cafeteria my first three years there.

So fortunately for my parents, they weren't given a gloom-and-doom prediction when I was diagnosed at age 10, and my dad almost immediately realized he is on the spectrum. So I have been lucky in this way. THough an unlucky drawback to that is that nobody has recognized my difficulties with anything other than social interaction - the area I have least trouble with.

The school can be so difficult to deal with to get services (and we're poor, so we can't afford any kind of therapy or anything). I only found out a few weeks ago that autism isn't even listed on the IEP, just speech/language impairment. And I'm about to go to college, and my needs for practical daily living skills have been essentially ignored. Apparently they have to reassess me in a month or so (when I'll be almost graduated anyway) because there are so many other people they need to reassess.

They said that it didn't really matter since the services wouldn't change anyway (I go to speech and have some accomodations, but that's it). THat didn't sound right to me, but those meetings are so quick, and I couldn't put anything into words in time. Who has an IEP meeting with an autistic adult without scheduling a follow-up within a week or so to address stuff like this?

My (NT) sisters growing up would a lot of times be jealous and ask why I wasn't required to do dishes and cleaning up and the like, but during the school year with school to attend and the work to do, I would get so burnt out that I would miss at least a month of school a year. As if I could handle learning new house skills on top of that! Unfortunately, I haven't been learning that fast during times when I have time, so there's lots of stuff like laundry that I need to learn to do. I think I can convince my parents to typing out lists of the steps in big print so I can take it with me (I have low vision, where I can't read things like the text I'm typing now even with the best glasses I can have - about a year ago they stopped being able to improve my prescription).

Sometimes people in their reactions can be a bit strong, as we often face negative depictions in the media as well as bullying in schools and other sorts of abuse, and especially as self-advocates, we often find ourselves confronting negative misinformation (such as people saying autism is worse than cancer).

Sometimes it can be hard to figure out when to "tone down" the reaction, so to speak. Much like the person who has been bullied all their life and then a family member pokes harmless fun at them. That happened to me a lot, where I would react aggressively to a harmless comment, or a relatively insugnifficant comment, after being exposed to so many insults and other negativity.

In grade school (1-8), I was an average student who skipped school a lot because of anxiety problems and just a tendency to "break down" for some reason.

In high school, I was a horrible student who skipped school a lot due to my low stress threshold, broke down for days over small things (like a random insult from a student I've never seen before), and never took part in extracurricular activities due to social anxiety.

So I didn't have the good grades or the extracurricular activities to cover up the downward spiral....  everything was falling apart, socially and academically... and I am male...  why wasn't I diagnosed?

For one, the diagnosis didn't even exist until 1994. Also, there are a number of times when people just don't see the signs, or they just think "oh, they're misbehaving" or "oh, he's just a bit sensitive" or "they're not trying hard enough". Even with a diagnosis, I am constantly being overestimated, underestimated, misunderstood, and ignored, alternately, with people whose jobs it is to work with people with diagnoses like ADHD and Aspergers and who care about me.

Basically, if you don't fit into their most stereotypical expectations, it can be quite difficult to obtain a diagnosis or understanding. On Youtube christschool mentioned in a video that a person who diagnosed his son put in a trait or two his son didn't have.

The director of special services at my school always says stuff like, "she's great with speaking and daily living skills, but she's not good at social interaction" even though I consistently tell her this is backwards. WHen I was first diagnosed, they cited my "difficulty with nonverbal communication" - other than eye contact, nonverbal communication is a great strength, and it's speech that is difficult, not body language.

Unfortunately, even some professionals have stereotypes people with the AS dx as being just a bit socially eccentric, and usually as having skills in math/computer science. So people who aren't skilled in math could be at a disadvantage in being diagnosed. There's all kinds of misconceptions, even among professionals, I prefer not to think of it unless I have to. It frustrates so much.

Janet;

Thank you for coming back, and apologising.
This makes me...strangely happy...

"For one, the diagnosis didn't even exist until 1994. "

Asperger's was first identified in 1938. It was finally recognized as a separate diagnosis from Autism in 1981. The diagnosis existed before 1994. What happened in 1994 was that the diagnositic criteria for autism and ASDs were clarified. It wasn't a new diagnosis, it was just clearer. That lead to an increase in diagnoses, and earlier. My daughter was diagnosed in 1992, two years before the 1994 revision of the Diagnostic and Statistical Manual (DSM-IV).

"Thank you for coming back, and apologising."

I'm not the one who apologized. I'm the one who was misunderstood. I'm the one who received the apology, and that makes me strangly happy as well.

I hope this means that you are here to stay!

Ah. I think I misunderstood when I read that figure. All I remember was that many people hadn't heard of it, and I read that it was added to the DSM in 1994. I started to question the accuracy of that recollection about a week ago, when I was reading a book published in '86 that referenced people with Asperger diagnosis. Though I did know earlier than Hans Asperger wrote at about the same time as Kanner did.

Also regarding the apology perhaps it was confused because of the statements you made about how you first reacted upon diagnosis. It's an extremely common reaction, especially when so little good information is given to parents of newly diagnosed children. A lot of times it seems like the parents are just left to settle it with whatever they knew or thought they knew beforehand.

They (professionals) should always focus on the positives, at least initially. Instead of being told things like, "if they don't recover, they'll be institutionalized", they (parents) should be told about positive strategies for living and addressing things like self-injury to work on those things. Then there should also be told that there are alternatives to institutionalization if their child still requires full-time care as an adult. It seems like much of the initial desperation would be ameliorated if professionals informed parents thoroughly and properly that it need not be devastation. I think the negative media coverage also has a large part in causing these unhappy cycles in the worries of a parent's mind.

That's the one I have the most trouble with.  I told a former teacher of mine in a high school emotional support program (she taught a lot of kids with ADHD or emotional problems or manic depression) that I've discovered that I have AS, just by doing my own research.  She said I probably don't have Asperger's because, "Asperger's kids are usually great at Math, and you're not.  Also, they're usually not very self-aware, but you are."

These stereotypes are real and they are the reason a lot of us can't be noticed as having AS.  Just look at me, for example.  I would have benefited from having my AS/PDD thing discovered in 11th grade, when I was placed into the emotional support program because every aspect of my life was in turmoil.  It should have been noticeable at that time.  But because I didn't fit several stereotypes, I was just thought to be "hypersensitive with anxiety, depression, and attention deficit."  And a lot of eccentricity for good measure.