Autism Self Diagnosis| Purple Ella

I am a Medical Doctor. Since I was studying med school one of my professors told me I was an "Aspie". Later in further years of school, some of my colleagues also mentioned that maybe I could be on the spectrum. But even me, that I am supposed to be a trained doctor, I am scared of getting a proper diagnosis. Because it took me a lot of years of practice to interact with patients and be able to perform normally with others (I mean, no one likes to be with a doctor that can't even look in the eye, right?). And I am afraid that a label would take away from me the possibility of getting a job, for example. Unlike what many young YouTubers portray, feeling "different" is not fun. It creates huge anxiety to lead conversations, even in a professional atmosphere and it drags a lot of energy. BTW Il love your channel. I wish more people took this topic seriously like you.

For many people (principally adults) there is little alternative to self-diagnosis because getting an "official" diagnosis is so difficult. The first point of contact is often the GP but many GPs know little about autism and have a dismissive attitude towards psychological conditions and this negativity puts people off. There is often an attitude that adults can cope and are a low priority for diagnosis, either because they can supposedly "manage" or that little can be done to help them. Private diagnosis is hugely expensive and may not be accepted by employers and other agencies when seeking support. As others have mentioned official diagnoses (or non-diagnoses) are not necessarily accurate as "experts" may have limited knowledge of autism or questionable ideas about it leading to over- or under-diagnosis and lots of inconsistency. Often the self-diagnosed autistic person knows much more about the condition than the "expert". Too much depends on the quality and commitment of those in the diagnosis process and too many people go without an autism diagnosis who would benefit from one.

I totally agree that self-diagnosis is real. There's always a chance of being wrong. But there's always a chance a professional can be wrong as well. We know this because so many females are misdiagnosed with other conditions before getting their ASD diagnosis. That being said, in terms of governmental/medical benefits or work accomodations, an official diagnosis by a certified clinician is still necessary.

10:00 "If we just went around believing each other about who we are and what we need, then there would be so much less prejudice and angst in the world" Perfectly said

Both my daughters have been formally diagnosed. When my youngest was diagnosed about 4 yrs ago, the psychologist told her, "Your dad is autistic too." She made that assessment by asking me questions when I would take my daughter to her appointments. So I suppose I have an informal diagnosis. I'm 57 yrs old and see no point of getting formally diagnosed, but looking back on my life, it certainly explains things I went through and go through. Especially the crippling anxieties.

I think a diagnosis as an adult female can be very difficult due to the automated camouflaging and masking skills that kick in. These can be so well oiled and maintained by fear and shame, that they are near impossible to let go of.

Sometimes u have to diagnosis yourself when u ask teachers or doctors & they don’t believe u have Autism but u know u do (like what happened to me) When I did get diagnosed at the age of 22, I had to fight to get it. 😡 I hope things get better & people start to listen to that person 😊

So my friend who is diagnosed and me who are professionally diagnosed's theory is that autism falls into the philosophical theory of "cluster categories". Basically autism, as a spectrum condition is literally cluster category rather than an objective yes or no feature, and there is a not insignificant amount of folk with autistic traits, but not enough to get a diagnosis. Similar to how there isn't really a "male brain" or "female brain", there is just a lot of overlap between the two categories, and there are distended men who identify as men with typically female brains, and cisgender women with typically male brains. We get the data on whether a feature is found more in men, women, or equally both genders by the self reported gender of those participating. The label is made to fit the lived experiences of gender, not the other way round. Same with autism. Autism as a category is made to differentiate specific features and traits that cluster together, but what traits a specific autistic person has will vary depending on them personally and how their autistic traits manifest. But there are clusters of useful ways of dealing with problems that most often are found in autistic people, and this and an autistic community can make autistic people feel less weird and less like outsiders,because there are lots people like them

I realised I may be autistic when I was fourteen. I showed my mum the list of symptoms and agreed so she took me to the gp. The gp also read the list and seemed pretty certain but had to refer me to the specialists. They then told me that I had to wait until I was sixteen to get the diagnosis. I'm fifteen now and will be sixteen in december, so I have to wait until then. Even though I don't officially know, I use the term autistic as I believe I am. However, I still will wait to get the diagnosis when I am sixteen x

I think I am autistic, I have done a lot of research and it seems a lot like me. But I wouldn't call myself autistic until I see someone that is trained in it. So I think I might have it but I don't consider myself autistic until then. Similar to you.

I don't have health insurance, and since I'm of a certain age and married I can't receive assistance from the government. Luckily, my husband will have insurance next month. I've been self diagnosed for a while now. However, I do not speak in autistic communities normally. I read forums and watch videos to learn the coping mechanisms that others use to help. So far I feel as I have made significant progress in my interpersonal relationships because of what I have learned. Socially, I'm still not doing well. I'm hoping my therapist can help there when I do eventually have one. My point is, self diagnosis can be a great tool if you're actively trying to learn how to manage your autism.

I'm probably sure I'm on the spectrum but my mom lies about me and how I act even though it clearly there

I absolutely love how you talked about this with such an open perspective to every group. You kept saying the exact things that I often find myself trying to express, so thank you for putting that out there! I was personally on the NHS diagnosis waiting list for a year and 9 months. I found being in that limbo for such a long length of time devastating to my mental health and so when the tumblr #actuallyautistic community welcomed me aboard as self-diagnosed it was such a huge relief and I felt accepted, understood and finally able to stim and to wear headphones in public to help myself cope better. Without a label I felt like I was 'making a fuss' or 'being too sensitive'. I only called myself autistic around family and one close friend and they knew I was self-diagnosed for the time being, so it certainly didn't harm anybody but was immensely helpful, if not life-changing for me. I am now overwhelmingly grateful to have an official diagnosis, along with the NHS's grand 12 page essay to prove it and it is a huge relief. But I shall always be 100% welcoming to self-diagnosed people. :)

Totally agree, nothing at all wrong with self diagnosis! Especially when waiting lists for diagnosis are so long & then it depends how well the person assessing you is trained! If you do an online test & score highly.. recognise lots of traits in yourself... what's wrong with trying to help yourself? Your life might be better with more self understanding.

I went for assessment 4 months ago. When I got the report, the psychologist said she couldn’t diagnose me with ASD because she didn’t have records to prove childhood development. I had made a 5 page report detailing everything as far back as I could remember, including all my 12 previous psychiatric diagnoses. I did not have anyone to prove my childhood as I am 60 and my parents, child psychiatrist were all deceased as is my husband. She asked me if I met all my milestones, which I didn’t know. She asked me if I was premature, I didn’t know, she asked me if my mother smoked or drank while pregnant: she did. Then she asked me if I wet the bed, I didn’t know. That’s all she asked me about my childhood. I was given a bunch of tests for ASD, depression, anxiety, and personality disorders. I showed autistic traits and behaviors that cause severe impairment with everyday functioning, and all recommendations were for social, emotional and communication problems. Then she diagnosed me with Schizoid/avoidant personality disorders, PDD, MDD, GAD, and PTSD. But not ASD due to not having records. My therapist (who works with autistic) and clinical director were shocked. They are certain that I am autistic, and want me to accept that I am. This doubt has tormented me for 4 months. I’m not sure if I am or not.

I have enough traits that I’m pretty sure I’m on the spectrum. However, I’m 69 years old and have managed to cope well enough that a formal diagnosis at this point is something I will not likely pursue. But videos such as yours are wonderful resources that offer valuable information and give a sort of yardstick of comparison.

I know I'm autistic, and I wont be diagnosed. That's right, I'm not copping to the charge, even if it might be true. I got confronted with it recently through a family member. The stigma is still bad enough that in certain lines of work, it's best to not make it "official". A shame, I suppose, but we Autistics want to be like everybody else, are anxious and quick to learn. Part of being like everybody else is acknowledging that we ALL suffer, autism is just one way. Want to recommend a book, and I didn't think I be doing it as an admitted autistic: "How to disagree without being disagreeable" the best book on verbal self defense I've seen. Cheers!🌺

I am self diagnosed as autistic because I am transgender and a professional diagnosis could risk my access to medical transition that is essential to me.

I heard someone on reddit say this to me when i was talking about how i doubt myself a lot (being self diagnosed). They said something like 'its very rare for a self diagnosed person to be wrong about their diagnosis' So think as long as you have done all the research you can and you still think its a label that fits you, then you're probably right about it. I do still deal with doubt pretty much every day but i live in the uk so even when i do finally reach out to get a diagnosis, i'll still probably end up waiting a year at the very least.

Thank you for this video, Ella. I am self diagnosed and have spent over a year deeply researching autism and the diagnostic criteria, reflecting on and journaling about my life and participating in forums with other autistic people. I am on a wait list and anticipate a formal assessment next year but it is going to cost me a few thousand dollars and I will have to travel out of town. It took me quite some time to find someone I could get to without having to stay overnight in another town and thus accrue even more costs. I am 52 years old and there was no chance that I would have been diagnosed in childhood though the signs were there. I have never been fully independent and am concerned about my future as a senior. My full self diagnosis is actually Autism, ADHD and Anxiety and I am very confident about this diagnosis. I think you've summed up this topic really well......just let them be.