How "easy" is it to get an autism diagnosis?

Post Reply New Topic

Hi, I haven't posted in years but the topic of autism has once again become relevant in my life, so hello again all. I am going to be assessed for autism later this year by my university, after my mother refused to acknowledge my concerns for the entirety of my teenage years, which is when I first took the initiative to do some research into what might be "wrong" with me. So, I am happy that I can finally decide for myself to get assessed.

After I told my mother, who does not believe in the existence of mental health, she expressed the view that psychologists are more than happy to diagnose anyone who steps into their office with anything, in order to fill a quota, or something along those lines. I would like to know if it is common to receive an unsubstantiated, or "fake" diagnosis of autism, because my mother has made me feel as if any diagnosis to do with the brain is invalid and means nothing. Both of my cousins are autistic and she blames it on their parents. Is it as easy as she says it is to get an autism diagnosis, or are there any statistics on the amount of people who are assessed and subsequently not diagnosed? Perhaps someone has some personal experience on the matter?

I feel a pressure to act very "normal" during the assessment, however the difference between meeting me for ten minutes and knowing me for ten days is immense, as I would display behaviour that is rather atypical. I am worried simultaneously that my struggles will be missed, or that I may do the opposite and emphasise my struggles, giving off the impression that I am "more" autistic than I am. My range of symptoms is rather wide, one day I may have lots of spare energy to spend on appearing like a confident person in front of someone for a good hour or so, whereas other days, if I become overwhelmed I can't even speak at all. I feel like everything is dependent upon how I am on the day...

Can anyone offer some advice/experiences/thoughts?

I'm gonna be a little blunt with this. Most "low-tier" mental illnesses such as ADHD, depression, and anxiety are extremely easy to get diagnosed with, and people can even fake them sometimes. Usually it's just a survey or two, a 10 minute talk, and you're good to go.

With something like ASD, it's not that simple. See, things like Autism have such a stigma around them that you can't just BS your way through a diagnosis. Often times there's going to be tests that last several hours, long discussions with your family members, and overall just much more intensive screening. This is true even for something "mild" like level I ASD. I recall my parents getting fussy about it because the initial screening alone costed $1,200 and 3 hours of their time.

I was assessed twice and still don't have a diagnosis. The first time was in my childhood, second time was in my teens where even though the woman said it was likely she still wouldn't diagnose me.

By the way, do not feel pressured to act "normal" during your assessment. If you mask a lot it is very hard not to, and if you're like me and masking just isn't "enough" you might be seen as "likely" having it, but I realized that feeling pressured to mask probably messed up my entire assessment and wasted the 500 dollars we paid. Do not mask and do not play up your autism.

I know that you are asking about a different kind of 'easy' but as a 54 yr old who has recently realized he is autistic (on 2/12/21 - what a great date for so many reasons but mainly numerically pleasing!) and is seeking an official diagnosis, mainly to enable discussions with loved ones who don't/can't yet believe my self diagnosis, it has been anything BUT easy. More on that in a sec but from the extensive research I have done over the past 7ish weeks, I definitely don't think receiving a diagnosis will be easy or you can put any validity behind your mothers thoughts and feelings.

On the process - I initially was going to go the 'private practice' route/not worrying about insurance and paying out of pocket but switched to going through insurance. First hurdle - getting a referral from my primary care physician, who hilariously asked what ASD stood for, which was fairly painless. However, faxing (yes - faxing no emailed PDFs allowed) the referral form to the Autism clinic in order to get on a waiting list was a two week process and many phone calls, emails and failed faxed attempts later, I am finally on a waiting list for an adult ASD assessment. I was instructed that if I don't hear from them in 6-8 weeks that I should call a certain phone number. I have a reminder on my calendar for 6 weeks to the day as I am not hopeful that I will be hearing anything prior. I take that back, I am always hopeful but if I were a betting man... And this is an Autism clinic - they know we hate making phone calls, right?!?!?! Have to keep in mind that they are probably mostly used to dealing with parents of Autistic children but still I find it amusing.

I will keep y'all informed as there is any news and I progress through the process but again, I definitely do NOT see it as being easy and would suggest looking at the motivations your mother may have for making those statements. Maybe not conscious motivations but motivations based in fear. Be strong and stand up for yourself but remember she is still your Mama. I have not yet told my Mom about my self diagnosis as the conversations with my wife and brother did not go anything like I thought they would. Imagine that? Waiting on an official diagnosis to have that conversation with my Mom because she didn't believe me when I told her I was an alcoholic 19 years ago and that is one of three things I still hold against her. Good luck and sorry to babble about myself.

I recommend that during the assessment you act "normal" for you. And try to enjoy it! I thought it was kind of fun. Presumably it will be someone with suitable credentials and experience doing the assessment so you might as well just be honest with them--after all, you want a correct diagnosis from them (whatever it is). As Rawto indicates there is likely to be more than one session and some tests. In addition to conversations with the Psychologist there were also some standard, structured written tests--the Psychologist enjoyed her lunch while I took them.

I was 64 when I received some information about my childhood that motivated me to learn more about Autism. Within a few months both I and my bride concluded there was a good chance I was a "High Functioning Autistic". I did have some trouble getting the assessment, though, because of my insurance provider--they weren't resisting the assessment, they just didn't understand what kind of professional was needed to do the assessment! They gave me multiple useless referrals. It took a few months to get past the bad information from the insurance company. If the University is using someone qualified to do the assessment then you've skipped past that problem. (It'll be a licensed Psychologist or Psychiatrist, right? An assessment performed by the school groundskeeper might not be as credible.)

And, with regards to your mother's nervousness about the assessment results, perhaps two observations are relevant:
(1) Getting a diagnosis doesn't change whether or not you are Autistic, only whether you know it.
(2) Getting a diagnosis doesn't change whether or not anyone else knows you are Autistic, unless they're told.

Thanks to the Pandemic I've not had much opportunity to share my diagnosis with many others so I don't know how that will go. But, I'm a retired, stubborn, 66 year old, financially comfortable introvert so I don't know that I have to care what others will think of the diagnosis--though I will avoid sharing it with folk I think might be jerks about it. For me, a diagnosis at age 64 just explained why I seemed to have had some problems other people did not--but those problems are behind me now. I find my diagnosis interesting but not very useful. Someone younger, hopefully, can find some practical use for the diagnosis to mitigate the predictable problems (even if they choose not to advertise the diagnosis); forewarned is forearmed!

No, it is not easy to get developmental disability diagnosis; however, in the United States at least, it is easy to get a mental health diagnosis.

Before you go to your evaluation, practice/visualize/think about acting however is most comfortable/natural for you.

My ASD assessment was over ten hours of testing. It's not just a sit-and-chat situation. The test results were evaluated by my neuropsychologist but also sent to another agency in the USA for double-blind confirmation. Everything was ranked with standard deviations and percentiles. During the tests I had no idea what was "the autism answer" or not, so I couldn't just fake my responses. A lot of the questions or tasks were word games or related to problem solving and spatial awareness. I didn't expect that and had no clue what they were looking for to confirm ASD. Yes there were personality inventories but that was only a small percentage of the day.

I think it was "easy" for me to get diagnosed because I fit all the criteria, but a random person wanting a label wouldn't be misidentified. I think it would be very difficult to fake the spiky profile that ASD presents.

I hope you get a thorough report after your evaluation and it will explain with data exactly what your strengths and weaknesses are. My report is 30 pages of tables, charts, and graphs comparing me to other people my age with and without ASD. A doctor can't just make that up. It's not a subjective opinion or judgement call.