Archive for the ‘overdiagnoses’ Tag

Is the changing definition of autism

Friday, November 11th, 2016

narrowing what we think of as ‘normal’?


I first learned about autism in 1997 in my high school psychology course. It was relegated to a small paragraph in a chapter on childhood disorders. The film Rainman had come out a decade earlier, publicizing the condition to a degree. But autism still wasn’t well-known – or well-understood, at the time.

That certainly isn’t the case today.

Since then I have been a special educator, an autism consultant, and, most recently, an autism advocate and researcher. I explore how both culture and ethics influence autism as a concept, diagnosis and lived experience. One thing that is clear is that the way we think about autism has changed.





Has society created more disabilities

Sunday, May 15th, 2016

I have been reading stuff by Enrico Gnaulati. He speaks uncomfortable truths about ADHD, Bipolar, and autism spectrum disorders being over diagnosed. It’s true that school systems have changed, education has changed, work places have changed and so has getting a job. Even back in the days it seemed like more people who were mentally handicapped were employed and now today they are on social security and living in group homes or at home unemployed and less of them have jobs but yet more of them are employed than people are with autism spectrum disorders.

Enrico writes how autism diagnoses have increased over the years. In 1991, it was 1 in 500 and by 2002 it was 1 in 150 and now today it’s 1 in 68 and he has written several times already how it’s 1 in 42 boys who have autism. But he has also written that toddlers who met the criteria at two no longer fit it at age four and so on. He also wrote about how kids who are in early intervention are more likely to be mislabeled by Kindergarten. Also he has written how slow to mature kids are more likely to be diagnosed. Also he has written how kids can mimic symptoms of Bipolar or autism or ADHD when in fact the kid is going through stress factors, the kid has learned they have to act up to get attention because their parents don’t pay them any attention so if acting up is the only way to get it, they will do it, and also to have ADHD, symptoms have to happen in school and at home, not in school only. If a kid is fine at home but is having symptoms at school, then it’s the classroom that is the problem. Kids are expected to sit still for longer periods of time, recess is less given to kids, recess is taken away, some kids are more active than others, some kids have a different learning style, some are just gifted, some are just introverted.

Enrico also wrote a book called Back to Normal and it’s about when ordinary kids get diagnosed with ADHD, Bipolar, and autism spectrum disorder. You can peek inside the book and read some of it and it goes into detail about how this happens. He is not denying that these conditions exist, some kids do truly have ADHD or autism.

He also wrote somewhere that autism is more diagnosed in the states than it is in the UK because eccentric is more accepted there while in the states, people are placed into square pegs and if you are not in that box, they pathologize your personality.

I had been thinking about what if people are disabled because of society. There are people out there who have true disabilities so no matter what changes, their disability will always be there but for people like me, we are only disabled because of the way the system is. Teachers teach subjects a certain way and you are forced to do them a certain way but if you have a different learning style and it’s not taught in your style, you have a learning disability. Back in my parents’ childhood days, people with poor social skills were just weird and eccentric. Now today they are considered disabled because you now need good social skills for employment. It is no longer acceptable to be different. It used to be so easy to just get a job then but people have gotten less trusting and now you need work experience, cover letters, recommendations and that creates roadblocks for people like me so that makes me disabled. Plus they now have personality tests to screen out people and I think that is a loophole to not hire people who have social disabilities so you would have to lie and you better be good at “faking it.”

Also Enrico wrote about kids who are slow to mature, what if their slow to mature caused them an impairment in school and with their peers? Also what if your differences caused you to be singled out and bullied in school? What if your slow to mature caused you to be misunderstood by your parents so you were in trouble more? Then you graduate and then all of a sudden all your social problems disappear because you are able to find people who accept you and are not intolerant  of differences and plus adults are too busy with their lives to even bother harassing someone who is a little different just because they do not conform to social norms like fashion, interests, socializing.

But I wonder something, can one be autistic in the states but not be autistic in the UK because of different standards? What about people who move to foreign countries but do not speak their language as their primary language? It will not come natural to them so they will always need to translate and I am sure they will find social situations exhausting when talking to people and listening and they might always need an interpreter but yet that wouldn’t be an impairment or a disability?  If they took away their accommodations, they would be disabled in that country until they go back to their fluent speaking country where their language is primary.

Imagine if we took away all the ramps and elevators, then people in wheelchairs and who have problems with going up and down the stairs and who use crutches would be even more disabled. That is how I feel about people who are a bit different. In one country they might have a disability but go to another culture, they don’t have one because of their standards and their social rules that fit with their condition.

I do believe they have stretched autism. It could be because times have changed so now people who were just quirky, eccentric are now struggling so they get labeled as being autistic.

I talked to my husband yesterday saying what if our son is just normal and it’s just the school that is the problem and it doesn’t fit with his personality and what if it’s just us parents with the problem and our standards are just too high. My husband reassured me he does have ADHD and he has been with lots of kids and they don’t act that way and he knows his nephew and he acted the same as our son does. He also told me his symptoms are still there when he is still around him but he is just controlling them better but they are still there so he is trying. I can imagine how much energy he must be using to sit still, not act up, not get into trouble more than an average child who doesn’t have it. But he just controls it less around me because I shut down because I get overwhelmed so I leave.

Only time our son is ever still is when he is playing video games or watching youtube. Of course because it’s a stimulant. That is what I read online about ADHD. They may be fidgety and always on the move but yet they are able to sit still when playing a computer game or when doing something they enjoy because it’s a stimulant for them. But make them sit still during a lecture or when you are talking or during a movie or a game, too hard for them to sit still. But even as a parent I have no idea what behavior is normal for a five year old and what behavior is ADHD. All I can do is compare him to other five year olds but I don’t know any others all the time I can see to know what is normal and what isn’t. But I do know for certain his behavior isn’t normal in school or else other kids there would be having the same trouble as him and I was already having troubles with him at home and in public so I was sure he would be having trouble in school and I was right but with support in place, he has been doing much better. Take it away, he will be back to having behavior issues again and acting worse because he would be having anxiety because he is always in trouble and he would hate school and resent it.

I was even worried what if my behavior was just pathologized when I was a kid and what if my impairments were just bigoted kids and lack of tolerance and there really was nothing wrong with me? What if I was just picked on by school staff? I also had problems at home too but what if I was just slow to develop and mature as Enrico said? What if the only thing I have “wrong” with me is I am just different than having a true impairment? Sure I had a language delay. What if my slow maturity is what gave me problems because of lack of understanding and I am sure all kids get from time to time “How old are you?” “Start acting your age” Quit being a baby” but I heard it a lot as a child so that was a normal thing for me to hear and I never knew how to act my age. I wouldn’t even know I was being immature but I did notice there were rules for how to act and react and each age group had their own rules and it seemed like kids automatically knew those rules and I didn’t. Just imagine being new to a university but no one bothers to hand you their handbook about their campus and that has their policies in it and none of the teachers don’t bother telling you the rules in their classroom like about late work assignments, redoing them, making up for them you missed, and if you are tardy or miss a class, etc. Wouldn’t you be anxious? Wouldn’t you always have to be learning things the hard way and you would probably be asking a bunch of questions because you want to understand and know the rules. When you are a child, you will react differently. You will test your limits and see what you can and can’t do, you will keep on making mistakes and learning that isn’t allowed. You will keep on getting into trouble and it will seem like to the adult you never learn and don’t follow the rules. You can’t expect a child to ask a bunch of questions to learn the rules.

My mother has told me she always knew I had something and she knew I had more going on than just a language delay but then she turns around and says to me a month ago that I am very normal and the only thing I had was a language delay. What? Whatever happened to she knew I had something and what about all these diagnoses I have had before Asperger’s? Was I a victim of labels as Enrico described? Am I just disabled by society because of the way life is set up, the education, work, school? Is this what my mother meant by I am normal, it’s just society that is the problem? Sure I can do anything but the thing is people have to let me do it if they will just hire me instead of requiring experience and cover letters and so on. But my husband has a true disability because he will always have a disability no matter what changes in life. He has severe dyslexia, brain damage so it keeps him from memorizing numbers and letters so it makes him mess up in math so he would be a terrible cashier, he also can’t write due to dyslexia and he would write too slow, he had bad birth defects in his ankles so that also limits him.

I can understand now why so called people who have autism say they are not disabled an they don’t see autism as a disability. I tend to think these ones are on the high end of the spectrum and just quirky and eccentric and I bet they wouldn’t have anything wrong with them if they lived in my parents childhood days, they would just be very smart and eccentric and absent minded. Now today it’s a disability. Their impairment would be society because of their standards they have at work and for education.

I can understand why my mother would say I am not broken, there is nothing wrong with me and big fucking deal if I have Asperger’s and anxiety. There are people with it who are truly disabled by it and more limited because autism is a disabling condition. It is not a quirk or a personality. It’s a shame that people have to get a label thrown at them just so they can get the help they need and so they can function but yet people who are slow learners are fucked because they slip through the cracks. That I don’t understand. It also impairs them too unless they also have a true disability or some other “impairment” that impairs them, then they are not fucked.

But what would Enrico suggest to parents of kids who have different learning styles, are not accepted by their peers due to difference and who are slower to develop but it’s causing them a significant impairment in occupational settings? Not all parents can home school or find a private school to suit their needs. There are people out there who do grow up different and then they become adults and they grow out of their social issues and problems because they learn how to manage them and they can also pick their environment that suits them. Kids don’t get this choice so they have behavior issues in school and get labeled and get special education. Then they become normal when they leave high school, go figure. But then there are people out there who never stop being different. I used to think I would grow out of my learning problems and being different but that never happened. But I did grow out of being treated different and that still happens occasionally. I also grew out of being bullied and harassed. Some people never leave that so is it society that is the problem? Are those people living in the wrong area where everyone is closed minded? Then professionals have to put a label on them and declare them disabled and they end up on Social Security. Then I see people online complain about “moochers” and people “abusing” the system. My argument is if they will start hiring people who are different and stop discriminating based on body language and what clothes they wear and how they live their lives, and get rid of the road blocks, less people would be on Social Security.

So my mom is right, I am not disabled, I am only disabled by society.


Questioning rather I had true depression

Wednesday, March 16th, 2016

In 6th grade I was diagnosed with depression. For years I thought depression was for when you are always unhappy and feeling down in the dumps. This was my experience with it. I was depressed because I was different and I knew I wasn’t normal. I wasn’t treated the same as other kids and I was not accepted or understood. I fought for justice and whatever the school had set up for me wasn’t working. The bullying got worse so I started to have a breakdown and then I was falling apart and I was having anxiety because of what was going on from my peers and by my school not protecting me. I was talking about killing myself and I even had to be pulled out of school for a while. I was nearly hospitalized but instead my dad took me home and I saw my therapist twice a week instead of once a week. There are lots of reasons I can come up with why I was so depressed. I held in my feelings for too long because I was taught they were wrong. I tried to be normal and then I couldn’t handle it anymore because I was expected to be more mature and act my age. I didn’t like having a new body so I felt like a little girl trapped in a body that was changing into a woman’s body and I wasn’t ready for it emotionally and I didn’t like the clothes so I tried to find ones that looked more childish.

But my wonders are if it’s okay to actually medicate people who have depression that is caused by their environment. What if someone was depressed because they were transgender but were forced to live the gender they were born with or what if someone was depressed because they were in a abusive relationship or living in a abusive home, what if someone was depressed because they were being emotionally neglected or because they were being bullied in school? Should all these people and adults be drugged for their depression? Should it even be diagnosed? Is it a misdiagnoses when it happens because their depression was environmental than chemical?

Now I have a history of depression in my medical records and it will show up now so it will follow me. I was medicated for depression because I was put on antidepressants. Was I depressed, yes? But do I think it was true depression? No. No wonder lot of people don’t understand depression. They think it’s being unhappy because of something in your environment. For people with true depression, they will always be depressed no matter what they do with their lives. That illness will always follow them so they do take medicine for it. Should people be medicated for depression when it’s caused by their environment? I was medicated for a reason because I had goals that were too much to ask I might not be able to meet so I had to take happy pills I call it. I think the treatment for it could have been learning to accept that there is no such thing as normal, everyone is different and some people are just more different than others but that doesn’t mean there is something wrong with them. I just needed to accept I will never be “normal” and stop obsessing about it. “What is normal?” my mom asks. Something might be normal for one family but not normal for the other. Some people have to sniff their food before they eat it. Some people wash their clothes before they wear it when they first buy it. I do not think anymore I was truly depressed in my teens and just because my mom said I have it doesn’t mean I did. I was depressed at one point in my life and then I got over it. There will come points in my life where I will be depressed due to stress or a long time change and then it will go away when things get better. But I have a hard time distinguishing between anxiety and depression. Anxiety can be very crippling when it gets bad. I do think depression is easily thrown around and too easily diagnosed by doctors than looking at what is the cause of it. yes they are depressed but they are not looking at the big picture to figure out why they are depressed or else it’s a misdiagnoses because they are not really fixing the problem.

School District pathologizing my child

Thursday, March 10th, 2016

My son has some issues like with social and communication and he may have some quirks like going around in his underwear at home, being a picky eater (are most kids?) and he will do something for long periods of the time but in the school district, he got a 32 on the CARS-2. I was shocked, I thought it would be negative because he isn’t autistic and doesn’t even seem to be close to being on the spectrum. Sure we all do things that are on it but it’s all about degree. Biting nails isn’t always an autistic stim or running around (that is also an ADHD thing) or chewing on sleeves or on the top of your shirt or chewing on ties on your coats and a kid doing the same thing all the time isn’t always an indication of autism nor is having strong interests. But anyway I read the results and they said he was eligible for Autism Spectrum Disorder for the IEP and it wasn’t a diagnoses they said, it’s only to get help in school and in another three years they will reevaluate him again and he might not qualify and he will do fine on it own after the help he got. They only sent me a copy of the draft and said they will mail me a real copy. My husband read it and he said “According to this, I am autistic” because he felt he was reading about himself except for the over affection part and the hyperactivity. My mom read it this morning and thought it was a bunch of bull. These were not specialists, they were just speech language therapists and they were putting a label on him. I told her it wasn’t a diagnoses but she told me it will become a label and follow him through school and it was hurt him and affect his career choices and told me I needed to call my son’s pediatrician and make an appointment to discuss the school district results. My son’s doctor saw no evidence of autism.

I honestly thought they were going to find other things and see what other services he qualify for but instead they focused on ASD and looked for “proof” so I feel they might have pathologized his behavior. They saw *Michael things he did and said it was autism. But this does prove my opinion of how quick people are to diagnose autism and see it and no wonder autism has gone up, is it because quirky kids are being diagnosed with it and kids are being pathologized? He did fit every area for autism too and I wonder if they exaggerated it all so he could fit the legibility for ASD so he can get help in school? None of it were lies what they wrote about him in the report, it was all true but what I mean by exaggerating is saying it’s all autism there instead of just normal things that are not holding him back. Like I say, it’s degree. I had a therapist in training I saw who liked to tap her fingers together when nervous, she was not on the spectrum. I wonder if the school district would have counted that as an autistic stim if she needed services in school as a kid?

But why couldn’t they look for other things in him like ADHD, or any behavior disorder, communication disorder, sensory processing disorder, etc. Even the doctors at Kaiser who tested him when he was three didn’t think he was autistic but they said he had some delays. They didn’t label him. But because he is now going into kindergarten, the school district had decided to start looking for ways to make him be eligible to get help in school because developmental delay isn’t considered a disability and they are not eligible for special education services in the state of Oregon but for preschool, yes.  So my mom told me to call my doctor and have him get tested by them for other things because this ASD thing will hurt him and it will turn into a label. I do want my son to get help in school but my mom says this is not the right way to do it so we have to dig in our heals and now it’s time to get my son tested for other conditions I guess to fight against this label.Could my son have AS traits, possibly. But he could also have ADHD and I don’t know what at his age is normal but they are saying it’s something that is found in autism and that autistic kids do. But even when my youngest brother was little, he wanted things done a certain way and would always cry “start over” and my grandma would have out all different kinds of bowls and plates and forks and knives, cups, etc so she wouldn’t have to put it all away again and take it back out because of my brother’s quirk. Then he grew out of it. I wonder if the school district would have said it was autism. They even said his needing to run around and be hyper was a self stimulant thing? Is it? I even wonder about myself how much of things I do is autism or what is just me being me. After all it’s all about degree and I am sure people out there read about it and think they have it and score high on the tests because they are pathologizing their own behavior which is why I am not fond of self diagnoses and doctors who quickly diagnose this. But hey if they are indeed having problems that are giving them roadblocks and they hold them back, they should then go try and get help and it doesn’t always mean it’s autism they have but yet they seem to feel satisfied with that label. But not everyone can afford help so they don’t get tested for it.

I think this is all about getting him services in school and they are just playing by the system to get my son help because of the laws we have so they had to make him qualify and they even told me they would make sure he qualifies but I didn’t know they were going to be focusing on ASD, I thought there would be other services he would meet. When I was in school, my IEP category I had was “other health impaired.’ When I was younger it was “multiple handicapped.” I don’t know if I was ever under autism but I was once in 7th grade and I think my mom got that fixed because she didn’t want that label on me and have it hurt me. My school did try to limit me in high school because of my diagnoses and I had to fight it. I didn’t like being told I couldn’t do this or that because of X Y and Z. They tried to get me from taking Driver’s Ed, they tried to talk me out of taking Drama, they said working at a McDonalds would be too overstimulating for me because it’s will be noisy, crowded, you would have to work in fast pace. I don’t like limitations. Why must people use labels to hold a kid back instead of letting them try and see what they can do and handle? This is what my mother wants to avoid for my child. Maybe someone from the school district should have come to our house for a couple months and watch how my son interacts and plays and how he spends his days and what happens at night so they get the right picture in their heads but maybe they would have still found autism because they could think he was on his Nintendo 3DS for too long or he is too fixated on Legos and him having tantrums when he doesn’t get his way is him being inflexible and it would “prove” it’s a characteristic of autism. He is also impulsive and when he gets bored, he has behavior problems and gets into trouble because he gets real hyper and then crabby and whiny and has tantrums and does his fake cries. He also cannot wait in long lines. My mom thinks it’s ADHD but I haven’t labeled him with anything because he doesn’t have a diagnoses. So my mom thinks he should be tested through professionals for everything and get the right label and use that in school.

And also according to these people who work for the school district, if you show too much of the behaviors that are found in autism even if they are just normal stims or normal interests, etc, it’s autism. Most people would have one or two things from it they said. So apparently it doesn’t matter how strong or normal your traits are, they will just say it’s autism. My school counselor had that same mind concept too about it so everything I did was Asperger’s to him and I would point out my brothers do it too and he would say they may have some of it too but they don’t have enough to have Asperger’s. He even said the same about my parents. My mom fired him and told him to stay away from me. She acted like he was some predator. I don’t think she liked how he was pathologizing me so she called him an idiot because she was so mad at him. But my mom was upset with the report about my son. She wasn’t mad. She thought it was a bunch of bull.

But the results I got were he is very close to normal, he doesn’t need to be in a self contained room, he can be with normal kids in regular classes and in a few years he might not need help anymore. He has made a lot of progress in the last two years since he started preschool. They said his traits were inconsistent. He has social issues but yet in other social areas he is normal in them but in other areas he struggles. He can do eye contact and then he doesn’t. We know more about autism now so it’s not all black and white as it used to be 30 years ago. He is social and then he wants to play alone. He is flexible but isn’t in some areas. That is what they mean by inconsistent. I guess that is what it means by it coming and going. It depends on the situation. Even mine come and go but I go extreme when it happens. Like I say, it’s degree. If my moments didn’t cause me any issues or didn’t hold me back or cause me roadblocks, then they wouldn’t have been symptoms and it would have just been normal human traits, not autism.