Are integration aides a common occurrence amongst those diagnosed with ASD as a child? How upsetting or negative has it been for you?

[Ruby]

Throughout school I had assistants who specifically worked with me and I found that very challenging to deal with (the aide would sit next to me in the classroom and tell me what to do much of the time). It is probably the worst thing that happened to me as it tended to create a ‘freeze response’, feelings of inadequacy, a feeling of being out of control & a lack of regard for my intelligence. It was almost a daily occurrence, and for hours during the day. There is also a sense of shame around my lack of intelligence as integration aides aren’t a particularly common occurrence and it was done in front of my peers, so nothing was discrete about the experience either. I feel that it was unnecessary for the most part as I was able to get high grades (just with extra time for tests and exams) in high school but I do admit that the very early stages of schooling would have been difficult without one as I hadn't developed the foundations and behavioural skills. I have been informed that public schools consistently get paid by the government every time a child with a diagnosis gets funded for an aide and that staff often make out that the student is less capable than they actually are in order to give the child as many hours with an aide as possible. That, to me is very deceiving to the child.

I feel extremely hurt and sometimes suicidal and worthless in instances where I feel incompetent and although my life is a lot better now, and I am free of specialised support, there are set backs in which I feel like an idiot.

Thank you for reading!

 

[All-Rounder]

In some ways the behaviour of the aide seems like a helicopter mothering, which can damage the child's decision making, which I have experienced. Being bothered in class by a classmate constantly also felt really bothersome as I wasn't able to focus, and I hate people's presence too close to me, it draws my focus and can give me anxiety, difficult to focus on the subjects.

However being avoided by kids was a lonely experience, I wanted sometimes to have a good and nice deskmate, which i did for a short while in highschool. She was helpful, nice, mature and had fun jokes and relaxed talking.

 

[All-Rounder]

I held myself back for 2 years of college because of my deskmate which was driving me insane every second of every day and nobody did anything about it when telling them. She was on me like leper, in class, on tests constantly talking to me and she had some motor and speech issues. She used me for high grade and destroyed my mental health and focus.

 

[Outdated]

Hi Ruby. Thanks for writing about this, it's a phenomenon that I've been wondering about myself. I have noticed a trend between different age groups amongst autistic people.

Older ones like myself that grew up when little was known about autism seem to have been more successful in adapting to society. I was treated as if I was being weird deliberately just to upset people, especially by my father. Forced to try and conform to social cues that I couldn't even see, let alone understand. Forced to find a way, a really rough form of behavioural therapy.

My childhood was pretty traumatic (and violent) but as soon as I was 16 I left school and got out in to the real world. There I found work where I did fit in very well. For the first time in my life I was treated with respect and common courtesy, those people earned my respect and I was able to learn how to be sociable from them.

I had a very successful life until I had a massive burn out. I didn't get a diagnosis for autism until I was 55 years old and have really only started learning anything about it in the past year or so. Maybe if I knew back then what I know now I might not have let myself burn out, but done is done.

Try and find friends that are supportive and empowering for you, you'll find that when you feel more confident and you're able to relax your brain works a lot better than at other times. This is true for many of us, and all of us end up feeling pretty stupid from time to time. Don't be too hard on yourself.

 

[Ruby]

Hi Ruby. Thanks for writing about this, it's a phenomenon that I've been wondering about myself. I have noticed a trend between different age groups amongst autistic people.

Older ones like myself that grew up when little was known about autism seem to have been more successful in adapting to society. I was treated as if I was being weird deliberately just to upset people, especially by my father. Forced to try and conform to social cues that I couldn't even see, let alone understand. Forced to find a way, a really rough form of behavioural therapy.

My childhood was pretty traumatic (and violent) but as soon as I was 16 I left school and got out in to the real world. There I found work where I did fit in very well. For the first time in my life I was treated with respect and common courtesy, those people earned my respect and I was able to learn how to be sociable from them.

I had a very successful life until I had a massive burn out. I didn't get a diagnosis for autism until I was 55 years old and have really only started learning anything about it in the past year or so. Maybe if I knew back then what I know now I might not have let myself burn out, but done is done.

Try and find friends that are supportive and empowering for you, you'll find that when you feel more confident and you're able to relax your brain works a lot better than at other times. This is true for many of us, and all of us end up feeling pretty stupid from time to time. Don't be too hard on yourself.

Thank you! It is interesting to see the different attitudes towards neurodiversity as life goes on. I certainly think it’s gone too far and that too much can be just as harmful. I hope I can make a positive difference and raise awareness so that people don’t feel alone, and even better, help people reconsider the importance of integration aides.

 

[Ruby]

In some ways the behaviour of the aide seems like a helicopter mothering, which can damage the child's decision making, which I have experienced. Being bothered in class by a classmate constantly also felt really bothersome as I wasn't able to focus, and I hate people's presence too close to me, it draws my focus and can give me anxiety, difficult to focus on the subjects.

However being avoided by kids was a lonely experience, I wanted sometimes to have a good and nice deskmate, which i did for a short while in highschool. She was helpful, nice, mature and had fun jokes and relaxed talking.

Thank you for sharing this! I think having someone too close, particularly if their breath stinks is also a huge factor in not being able to focus. What you said about the aide impairing a child’s decision making would definitely make sense, as having a person do too much can hinder overall development.

 

[Luca]

I think having aides can definitely make bullying infinitely worse, because then children are seen even more as outcasts. That was my experience, anyway.

The aides I had were also not very experienced or well-educated about autism, and would do things like physically forcing me to hold a pencil the right way, and watching me in the bathroom because they assumed I didn't know how to wipe or wash my hands. They also acted absolutely horrified and were very harsh on me if I said things that were too blunt or came off as rude, like what do you expect from a 6 year old child who struggles with social skills?
They would take away stuffed animals that I used as comfort objects, and took me to the principal's office if I had a meltdown, so I would get punished for it.

They were really condescending and infantilizing towards me, even though I was reading, writing and learning at a pace that was at least three grade levels above my classmates. They didn't seem to understand the difference between autism, and an intellectual or developmental impairment.
Eventually there was a point when I was a bit older that I didn't have aides or special ed accommodations, and was put into accelerated classes where I belonged. I did way better after that.

This was in the 1990s and early 2000s by the way, I don't know if it has gotten better or worse since then.

 

[Outdated]

They also acted absolutely horrified and were very harsh on me if I said things that were too blunt or came off as rude, like what do you expect from a 6 year old child who struggles with social skills?

When I was 5 my teacher was a hippy lady with a hair all the way down to her bum, and a guitar. (1970) She used to make us sit in a circle and sing along while she played Beatles songs. I wasn't very talkative back then and I hated singing so I'd just sit there.

On The Queens Birthday the school played God Save The Queen over the PA system and we were all supposed to stand to attention and sing along, I refused. I got sent to see the headmistress and when she asked why I wouldn't sing my answer horrified her so much that she phoned my father and told him the he had to come and pick me up from the school immediately.

So he's just been called out of work and he's lost a half day's pay and he's not too happy. When the headmistress told him what I'd said he burst out laughing and told her that I deserved an afternoon off for that.

"My Dad says we don't have a Queen. We have a Prime Minister."

It was a different world back then.

 

[Outdated]

and was put into accelerated classes where I belonged. I did way better after that.

I really wished they'd done that with me, I even asked them to on many occasions. No exaggeration, I could have finished high school by age 11 and had a couple of PhD's by the time I was legally old enough to leave school.

Instead they kept me back because I was socially immature.

[Edit] yes, I'm pushing 60 now but still angry about that. School was very traumatic for me, bullied and tormented by students and teachers alike and even sexually molested, and they just told me I had to stay another year with these [long string of Australian language]. No thank you, not for me. I left as soon as I was legally allowed to and never looked back. 15 years ago I was accepted and enrolled in university for a PhD in computer science, but when it came time to actually attend I wasn't able to and had a complete meltdown instead.

You gotta love the public education system.

 

[Ruby]

I really wished they'd done that with me, I even asked them to on many occasions. No exaggeration, I could have finished high school by age 11 and had a couple of PhD's by the time I was legally old enough to leave school.

Instead they kept me back because I was socially immature.

[Edit] yes, I'm pushing 60 now but still angry about that. School was very traumatic for me, bullied and tormented by students and teachers alike and even sexually molested, and they just told me I had to stay another year with these [long string of Australian language]. No thank you, not for me. I left as soon as I was legally allowed to and never looked back. 15 years ago I was accepted and enrolled in university for a PhD in computer science, but when it came time to actually attend I wasn't able to and had a complete meltdown instead.

You gotta love the public education system.

It is disappointing that others didn’t see your potential. I’m dealing with the disappointment myself of others focusing on what I can’t do and making up statements that are false, even, when there was clearly great potential, especially since I coped much better with the learning style in high school. I felt that ‘autism’ meant ‘incompetent’ to society and I am redefining ‘autism’ to what is actually on the diagnostic criteria, if people will look at the criteria, and I have come to terms with having the label, but autism isn’t very substantial to me compared to cognitive defects. I also have qualities of intelligence, but it sucks when there are qualities of being unintelligent too and that is what can more often be the focus.

 

[Ruby]

I think having aides can definitely make bullying infinitely worse, because then children are seen even more as outcasts. That was my experience, anyway.

The aides I had were also not very experienced or well-educated about autism, and would do things like physically forcing me to hold a pencil the right way, and watching me in the bathroom because they assumed I didn't know how to wipe or wash my hands. They also acted absolutely horrified and were very harsh on me if I said things that were too blunt or came off as rude, like what do you expect from a 6 year old child who struggles with social skills?
They would take away stuffed animals that I used as comfort objects, and took me to the principal's office if I had a meltdown, so I would get punished for it.

They were really condescending and infantilizing towards me, even though I was reading, writing and learning at a pace that was at least three grade levels above my classmates. They didn't seem to understand the difference between autism, and an intellectual or developmental impairment.
Eventually there was a point when I was a bit older that I didn't have aides or special ed accommodations, and was put into accelerated classes where I belonged. I did way better after that.

This was in the 1990s and early 2000s by the way, I don't know if it has gotten better or worse since then.

I had integration aides in the 2000’s & 2010’s and my experiences weren’t to the point of being helped with basic self-care, but it was generally assumed that I would need help with the academic aspects of school. By the time I got into high school, it was a much better experience as I thrived (except for being slow at completing the tasks) and the aides were in the room, but they would ask if I was okay with them sitting with me or if I needed help. I am not sure if the system has changed, as similar approaches seemed to be used for other students with aides, but it was much more respectful in high school, though maybe that is because of age. I heard that some schools treat the integration aide as an assistant for the entire class and apparently some students aren’t allowed to know that the aide is for them. I think that it would be a much better approach to have an assistant for the class and also to consider different learning styles and the use of technology so that students can have that independence, but according to their way of learning/working. I would like to push for that.

 

[Misty Avich]

I had an aide in the classroom with me too, right up until age 16. When I got to 11 I didn't have an aide in every classroom with me, just in the subjects I found hardest, like math, science and technology.
I liked having an aide because it helped me stay organised, otherwise if I didn't have an aide I probably would have got detention after detention.
But the downside to having an aide was it had a negative impact on my social life. The other kids saw me as "the r. kid" and steered clear of me, not considering my feelings. So I had to turn to my aide for social support too, like what the other kids had their friends for.
So being diagnosed as on the spectrum was more disabling socially for me than the disorder itself. If I hadn't of been diagnosed then I probably would have had a normal social life at school but my grades would have suffered and I might have even gone off the rails, like getting into drugs. I was "watched" too much at school to even go there.

 

[Outdated]

That stigma was much more pronounced when I was growing up. Many parents like my own simply wouldn't admit to themselves that there could possibly be anything wrong like that with their child. Having a child with mental problems meant the whole neighbourhood would turn away from you. So instead we were forced to try and act normal and when we had meltdowns we were accused of doing it deliberately just to get our own way.

I think to some degree there'll always be that bit of a stigma there.

 

[Misty Avich]

That stigma was much more pronounced when I was growing up. Many parents like my own simply wouldn't admit to themselves that there could possibly be anything wrong like that with their child. Having a child with mental problems meant the whole neighbourhood would turn away from you. So instead we were forced to try and act normal and when we had meltdowns we were accused of doing it deliberately just to get our own way.

I think to some degree there'll always be that bit of a stigma there.

My parents felt the same, but unfortunately they were forced to have me diagnosed. I was only little at the time so I don't know who or what was going on, but I know it was stressful for me to have to go to all these appointments to discuss how crazy I was and how I can be fixed and to give me a label that made me feel so much more singled out from the other kids than my ASD/ADHD did.

I developed typically as a baby/toddler and so everyone assumed I was emotionally ready to start full time school at the age of 4, along with my typically developing peers.
But on my first day of school I seemed spooked and acted out of character, which came as an unexpected shock to my parents. But my parents were accused of abusing me, so they had to prove they weren't abusing me, which then began a string of child psychiatrists and assessments to see why I was behaving so out of character (even though I settled in quite well after a couple of weeks so I wish they had just let me be). But no, I had to get statemented and my parents got the impression that they'd be bad parents if they refused to go through with the process, so they felt forced into it, which was stressful for them as well as for me. They didn't even know what autism was.

So yeah that's my story and I wish it was different. If I hadn't of acted out on my first day at school then I probably would have gone unnoticed like 99% of girls on the spectrum. I get so bitter and angry about it and I can't bear to look at any pictures of my 4-year-old self.

 

[Ruby]

I had an aide in the classroom with me too, right up until age 16. When I got to 11 I didn't have an aide in every classroom with me, just in the subjects I found hardest, like math, science and technology.
I liked having an aide because it helped me stay organised, otherwise if I didn't have an aide I probably would have got detention after detention.
But the downside to having an aide was it had a negative impact on my social life. The other kids saw me as "the r. kid" and steered clear of me, not considering my feelings. So I had to turn to my aide for social support too, like what the other kids had their friends for.
So being diagnosed as on the spectrum was more disabling socially for me than the disorder itself. If I hadn't of been diagnosed then I probably would have had a normal social life at school but my grades would have suffered and I might have even gone off the rails, like getting into drugs. I was "watched" too much at school to even go there.

Thank you for sharing. I’m sorry your social life wasn’t great. I hope you have a satisfying social life now.

 

[Ruby]

That stigma was much more pronounced when I was growing up. Many parents like my own simply wouldn't admit to themselves that there could possibly be anything wrong like that with their child. Having a child with mental problems meant the whole neighbourhood would turn away from you. So instead we were forced to try and act normal and when we had meltdowns we were accused of doing it deliberately just to get our own way.

I think to some degree there'll always be that bit of a stigma there.

Yes, I think the stigma Ian’s how we are treated is worse than what autism ect. actually entails, for some of us. Whether there is a diagnosis or not, people still get treated differently and stigmatised and no one really understands unless they have similar struggles themselves.

 

[Ruby]

My parents felt the same, but unfortunately they were forced to have me diagnosed. I was only little at the time so I don't know who or what was going on, but I know it was stressful for me to have to go to all these appointments to discuss how crazy I was and how I can be fixed and to give me a label that made me feel so much more singled out from the other kids than my ASD/ADHD did.

I developed typically as a baby/toddler and so everyone assumed I was emotionally ready to start full time school at the age of 4, along with my typically developing peers.
But on my first day of school I seemed spooked and acted out of character, which came as an unexpected shock to my parents. But my parents were accused of abusing me, so they had to prove they weren't abusing me, which then began a string of child psychiatrists and assessments to see why I was behaving so out of character (even though I settled in quite well after a couple of weeks so I wish they had just let me be). But no, I had to get statemented and my parents got the impression that they'd be bad parents if they refused to go through with the process, so they felt forced into it, which was stressful for them as well as for me. They didn't even know what autism was.

So yeah that's my story and I wish it was different. If I hadn't of acted out on my first day at school then I probably would have gone unnoticed like 99% of girls on the spectrum. I get so bitter and angry about it and I can't bear to look at any pictures of my 4-year-old self.

I’m sorry it was tough for you. I feel ashamed that I was diagnosed so early and I think it could have been better or just as bad if I came to the conclusion of being autistic on my own terms, because autism seemed to mean ‘incompetent’ when I was a child.