Published on 12, July, 2020
Im not officially diagnosed with autism, but I am mostly sure that i am autistic or at least neurodivergent in some way. I have always felt like there was something wrong with me, even when i was young I realised that there was something different about me, the way I thought, behaved and communicated was different than other kids. As i grew up, i just thought i must be doing something wrong, so i just tried to pretend to be more normal by copying people around me.
A few years ago, i was looking up something about autism, i don’t remember why, and I realised that autism is actually a lot different than what I thought and saw before on tv or media. And I also realised that i fit into most of traits and it explained a lot about my life and how I felt. I didn’t tell anyone about this, but I kept thinking about it ever since.
Around 3 years ago my younger brother got diagnosed with autism, so my mom started to learn more about it to be able to help and understand him better. And she told me about how she thought that i actually have shown a lot of signs since my early childhood.
At first i ignored it and thought i was just overthinking, but then i kept seeing things about autistic people and their experiences and i keep thinking about how much i relate. I also did a lot of research into the subject and even tried multiple online tests, so im mostly sure i have autism. But since i am still undiagnosed, it feels a bit wrong to actually call myself autistic or tell anyone. Can i still say i am autistic even if i dont have an official diagnosis? Would that be morally wrong or offensive to diagnosed autistic people? Sorry if i said anything rude or wrote too much.
PurpleLily said:Can i still say i am autistic even if i dont have an official diagnosis?
Yes absolutely! Self identification is perfectly valid, after all you know yourself best!
Welcome to your autistic community!
PurpleLily said:Would that be morally wrong or offensive to diagnosed autistic people?
Absolutely not! Please don’t worry about this. You are the expert on your own autistic experience!
For context, many of us are self identified including myself. I do not intend to pursue formal identification as I think it would be an unnecessarily negative and pathologising experience for me.
You are definitely not alone!
Ausomely Autistic said:I do not intend to pursue formal identification as I think it would be an unnecessarily negative and pathologising experience for me.
How do you diagnose/identify yourself if you don't use the criteria used by medical professionals?
If you don't use these criteria, then how do you know you are autistic? ie what criteria are you using?
Or do you actually use the medical criteria for diagnosing yourself?
If you do use the same medical criteria for your self-diagnosis, then what is the difference between you doing it and a medical professional doing it apart from thoroughness and that someone else is making the decision?
You say that 'formal identification' would be 'unnecessarily ... pathologising' but pathology is the study of disease.
Autism isn't a disease so a medical diagnosis isn't 'pathologising'.
The autistic brain is wired differently though ie physically different.
Yes I am aware of this. My experiences of the world are vastly different to those of non autistic people so the fact that this is my experience is evidence of a different neurology.
I am very monotropic, hence why I have been researching autistic experiences for years. This is a key indicator that I am autistic, because why would anyone be so interested in autistic people if they were not autistic themselves?
Please read these links:
https://reframingautism.org.au/service/i-am-questioning-my-identity/#:~:text=Self%2Didentification%20is%20very%20personal,lots%20of%20research%20and%20reflection.
https://www.autisticparentsuk.org/post/self-identification-is-valid-formal-identification-is-a-privilege
My diagnostic report also listed “Restricted, Repetitive patterns of behaviour, interests, or activities” and “Deficits in Developing, maintaining, and understanding relationships”.
As I understand it, I had to score above a certain level in all of those criteria to meet the requirement for a formal diagnosis.
That's what the *'triad' re diagnosis is about - lots of people might think they are autistic or have experiences that are within autistic experience, but to actually be diagnosed as autistic, you have to come within the criteria (which you are dismissing).
The triad of impairments is extremely outdated and pathologising, please refer to the Double Empathy Problem instead.
Please do not question my autistic identity, I know who I am. I should not need to prove my autistic identity to other autistic people such as yourself, as you should know the impact and harm this can cause.
I am autistic. I would not base my whole life and motivations around autistic community if I wasn’t.
I don’t question or invalidate your identity or experiences so please don’t do this to me.
Ausomely Autistic said:neurology is unnecessarily medicalised
I don't agree with this.
Ausomely Autistic said:By researching autistic experiences and culture for several years and heavily relating to autistic lived experiences.
You are saying then that because you relate to autistic experiences you are autistic.
*Language and communication: difficulties in recognising and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.
Social Emotion: difficulties with recognising and understanding other people's feelings and managing their own.
Sensory Perception: Many autistic people experience some form of sensory sensitivity (hyper) or under-sensitivity (hypo). There are 7 senses - auditory, visual, touch, taste, smell, proprioception and vestibular.
(Autism Hampshire website)
This is a link to a fuller description that includes rigid behaviours and routines:
https://www.clinical-partners.co.uk/for-adults/autism/symptoms-of-autism
Thanks FrozenHeart
I appreciate you adding to and enhancing my explanation!
That’s okay!
It sounds like the people on here have had a range of experiences. I think some had a single online session, as you said.
Okay I didnt know that. Ive always just heard that you have a few interviews where they ask questions and then they might have you do a few activities. Sorry
debatable. From what ive heard from people who were formaly diagnosied, theres like a couple sessions and then they diagnose you. Is that as thourough as years of self research?
I had a two hour initial interview, a 2 hour IQ test, the ADOS test (over an hour), around a dozen forms to fill in and they did two separate interviews of people who know me (with me not present) and the diagnosis was confirmed by two separate clinicians (as per guidance) so I think it was extremely thorough.
Even now I sometimes doubt my diagnosis but before it I really worried I was just convincing myself falsely that what I experience is real.
Ausomely Autistic said:I don’t need an uneducated professional to tell me who I am. I know who I am.
This is probably true in some ways but not completely. People who diagnose neurological conditions have a basic knowledge across a whole lot of diagnoses. Unless they specialize in autism, their knowledge probably only goes as far as the DSM5 and stereotypes. I own a copy on the DSM5-TR (because what other 16 year old just goes out and buys one lol) and asd section isnt exactly as thorough as researching nonstop for years. It does have the fundimental parts of autism so I think you would need to at least fit into those. But I feel like there is a lot of usefull additional information that isnt included but is availible by interacting with other actually autistic people like on this forum, watching various content creators, or researching old and new data (information is always getting updated).
The thoroughness could be debatable. From what ive heard from people who were formaly diagnosied, theres like a couple sessions and then they diagnose you. Is that as thourough as years of self research? And masking could always be a problem. They most likely cant see the whole parts of you based on a couple interractions especially if you are masking.
You say that 'formal identification' would be 'unnecessarily ... pathologising' but pathology is the study of disease. Autism isn't a disease so a medical diagnosis isn't 'pathologising'.
The process to get a formal diagnosis can be long and stressful for people and that could make it a negitive experiance that could be avoided by not getting one.
Autism isnt a disease but some people may treat you like it is one. Like there is something wrong with you and that you need to be fixed.
I think that is kind of where Ausome was getting at (correct me if im wrong)
The medical model is the pathology paradigm. I think diagnosis in the context of autistic people is a tool and function of the pathology paradigm, after all you usually only go to the doctor if you are ill. You shouldn’t need to see a doctor in order to gain identification of your neurotype. However I understand that we live in a society with limitations like this where my neurology is unnecessarily medicalised.
I also understand that for some autistic people formal identification is necessary in order to gain access to support.
If you want to learn more about the pathology paradigm, please read:
https://neuroqueer.com/throw-away-the-masters-tools/
By researching autistic experiences and culture for several years and heavily relating to autistic lived experiences.
Writing reports about autistic experiences and pursuing this as a dedicated interest, I would not be so interested and invested in autistic experiences if I was not autistic.
I have felt an instant intuitive deep connection with other autistic people for years, so I don’t need an uneducated professional to tell me who I am. I know who I am.