Autism and Functioning Labels: "You're not that Autistic"
Hey All!
Sorry for the delay in posting, it's been kind of a hectic week! That's actually part of why I've chosen to talk about 'Functioning Labels' today. Both those within and outside of the autistic community will be aware of the phrases 'High Functioning' and 'Low Functioning' but less people will probably be aware of the controversy surrounding them. I've heard several different people define these terms several different ways. Some people use quite a broad definition of 'High Functioning,' using it to mean anyone they deem to be 'coping,' while others seem to use a very specific definition as a reference to average IQ and the ability to talk. Regardless of the exact intended meaning of these phrases many of us believe them to be outdated and unhelpful. There are two primary problems with the use of 'Functioning Labels' and this is what I wish to discuss.
Firstly, we don't always feel 'High Functioning.' It is debatable whether these terms maintain medical validity, but regardless of this issue it is important to remember that being labelled 'High Functioning' can leave a lot of people feeling unsupported. To many of us being labelled 'High Functioning' can make us feel as though the instances in which we struggle aren't recognised and as though we are expected to cope without support. It not only doesn't recognise that the extent to which we struggle can fluctuate, but it is many ways actively denies this simple fact. As I said, for me personally this week has been a lot and at times I have felt incredibly overwhelmed; in short at many points this week I haven't felt 'High Functioning' at all. People may argue that since I still manage to go to work and attend classes that I have functioned absolutely fine, but these people haven't seen the amount of effort and support from others that this task has taken at various points this week. If it hadn't been for those who have supported me this week I don't think I would of managed to do half the things I've done (a particular thank you goes to the friends who played scrabble with me until 1am last night after a particularly stressful couple of days, you know who you are). The problem is that for many of us who managed the day to day with strategies and masking, no one sees our wobbles, our meltdowns and shutdowns and this can lead people to believe they don't happen. I'm not saying that the reason we should get rid of 'Functioning Labels' is that we can't 'function' or that we can't achieve things, but rather that these labels have a tendency to leave those they deem to be coping without any support until they aren't coping anymore.
The other big problem I have with the use of 'Functioning Labels' is that people seem to equate them with how autistic you are. You tell someone you're 'High Functioning' and they presume that means that 'you're not that autistic' when that simply how anything works. This is partially down to the miscommunication which is facilitated by 'Functioning Labels' and partially down to ignorance surrounding autism diagnosis. It is understandable that people would make such mistakes if they have never experienced an autism assessment, especially when our language is also highly confusing. I think what more people need to be made aware of is that the doctor that diagnoses you gives you a 'Functioning Label' based not on how many symptoms you have but rather how they see you to be experiencing these symptoms. A good way to illustrate this is probably with personal experience. Prior to my assessment I had plenty of people around me telling me that if I was autistic I must not be that autistic but yet it was fairly easy for my doctor to diagnosis me. One of the ways I explain this confidence to others who are not on the spectrum is with my questionnaire scores. Part of the diagnosis process is a handful of very detailed questionnaire which can really help the individual diagnosing you to make their decision. One score that stands out in my memory is that on the one of them I got 15; most autistic people get 33 or less. What these questionnaires did for me was validate my autistic experience and show those around me that it wasn't a close call; I experience a lot of autistic traits. The issue comes in when people try to equate this with your 'Functioning Label', because ultimately you could experience almost every trait related to autism and be deemed 'High Functioning' and you could experience less traits of autism and be deemed 'Low Functioning.' Autism is an incredibly personal experience.
Connor Ward mentioned in his video on 'Functioning Labels' that people had begun to discuss the idea of 'Support Labels' instead and I love this idea. I want one day to be able to say "Actually I'm finding things a little tough today, I feel high support today" and feel confident in asking for the help I need. This is the kind of direction we need to move in as a society (btw Connor, I love you're videos!)
Thanks guys, take care of yourselves!
See you later Alligators!
Freya x
PHOTO SOURCE: https://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/
Sorry for the delay in posting, it's been kind of a hectic week! That's actually part of why I've chosen to talk about 'Functioning Labels' today. Both those within and outside of the autistic community will be aware of the phrases 'High Functioning' and 'Low Functioning' but less people will probably be aware of the controversy surrounding them. I've heard several different people define these terms several different ways. Some people use quite a broad definition of 'High Functioning,' using it to mean anyone they deem to be 'coping,' while others seem to use a very specific definition as a reference to average IQ and the ability to talk. Regardless of the exact intended meaning of these phrases many of us believe them to be outdated and unhelpful. There are two primary problems with the use of 'Functioning Labels' and this is what I wish to discuss.
Firstly, we don't always feel 'High Functioning.' It is debatable whether these terms maintain medical validity, but regardless of this issue it is important to remember that being labelled 'High Functioning' can leave a lot of people feeling unsupported. To many of us being labelled 'High Functioning' can make us feel as though the instances in which we struggle aren't recognised and as though we are expected to cope without support. It not only doesn't recognise that the extent to which we struggle can fluctuate, but it is many ways actively denies this simple fact. As I said, for me personally this week has been a lot and at times I have felt incredibly overwhelmed; in short at many points this week I haven't felt 'High Functioning' at all. People may argue that since I still manage to go to work and attend classes that I have functioned absolutely fine, but these people haven't seen the amount of effort and support from others that this task has taken at various points this week. If it hadn't been for those who have supported me this week I don't think I would of managed to do half the things I've done (a particular thank you goes to the friends who played scrabble with me until 1am last night after a particularly stressful couple of days, you know who you are). The problem is that for many of us who managed the day to day with strategies and masking, no one sees our wobbles, our meltdowns and shutdowns and this can lead people to believe they don't happen. I'm not saying that the reason we should get rid of 'Functioning Labels' is that we can't 'function' or that we can't achieve things, but rather that these labels have a tendency to leave those they deem to be coping without any support until they aren't coping anymore.
The other big problem I have with the use of 'Functioning Labels' is that people seem to equate them with how autistic you are. You tell someone you're 'High Functioning' and they presume that means that 'you're not that autistic' when that simply how anything works. This is partially down to the miscommunication which is facilitated by 'Functioning Labels' and partially down to ignorance surrounding autism diagnosis. It is understandable that people would make such mistakes if they have never experienced an autism assessment, especially when our language is also highly confusing. I think what more people need to be made aware of is that the doctor that diagnoses you gives you a 'Functioning Label' based not on how many symptoms you have but rather how they see you to be experiencing these symptoms. A good way to illustrate this is probably with personal experience. Prior to my assessment I had plenty of people around me telling me that if I was autistic I must not be that autistic but yet it was fairly easy for my doctor to diagnosis me. One of the ways I explain this confidence to others who are not on the spectrum is with my questionnaire scores. Part of the diagnosis process is a handful of very detailed questionnaire which can really help the individual diagnosing you to make their decision. One score that stands out in my memory is that on the one of them I got 15; most autistic people get 33 or less. What these questionnaires did for me was validate my autistic experience and show those around me that it wasn't a close call; I experience a lot of autistic traits. The issue comes in when people try to equate this with your 'Functioning Label', because ultimately you could experience almost every trait related to autism and be deemed 'High Functioning' and you could experience less traits of autism and be deemed 'Low Functioning.' Autism is an incredibly personal experience.
Connor Ward mentioned in his video on 'Functioning Labels' that people had begun to discuss the idea of 'Support Labels' instead and I love this idea. I want one day to be able to say "Actually I'm finding things a little tough today, I feel high support today" and feel confident in asking for the help I need. This is the kind of direction we need to move in as a society (btw Connor, I love you're videos!)
Thanks guys, take care of yourselves!
See you later Alligators!
Freya x
PHOTO SOURCE: https://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/
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