Self-referral

[Georgiamiaf]

Has anyone here completed a self-referral for an autism assessment? I have a history with doctors not taking me seriously and I really have to push to get my opinion heard. I would prefer to do a self referral and I am wondering if anyone has done one themselves and could give me some tips?

[MSGSTL]

Hi!

I did a self-referral back in 2016 when I was thinking about going to grad school. This is what I did: I called a behavioral health clinic in my area (St. Louis) and I hooked up with a therapist (LCSW). We had sessions once a week and spoke of the possibility that I was autistic. After two months, I asked him if he could do a diagnostic test for autism. He said he wasn't qualified to do the ADOS (Autistic Diagnostic Observation Schedule) since he did not have a doctorate or an M.D. What he suggested is I make an appointment with one of the psychologists at the clinic. After that session, I went the receptionist and asked for an appointment with a psychologist. She asked "what is your chief complaint?" I replied, "I would like to speak to someone about the possibility that I am autistic" The receptionist made the appointment for an intake assessment (the intake assessment is where you describe to the psychologist your reasoning for wanting the ADOS.)

When the day came for my intake assessment, the first thing the psychologist said was, "Why do you feel you might be autistic?" She said it in a semi-cynical way which pissed me off (Sorry about my French). I said, "Because I have been doing some research (Always do your research!) and the anecdotes I have read fit me to a tee." In addition, I present with all the comorbidities of an individual with autism (OCD, GAD, SAD, etc.) She was somewhat blind-sided by my pool of knowledge (Always do your research!) as well as the aggressive (Let's call it mega-assertive) manner in which I presented myself.

She then made mention of my age (I was 52 at the time) insinuating that it was too late in the game for me to be tested (Testing usually takes place as a child or adolescent) This pissed me off even more (There's my French again, sorry). I responded with one simple question. "Doctor, I said, if you had something that was detracting from your quality of life, wouldn't you want to know what it was?" At that, she set up the appointment for the testing! I came back two weeks later and underwent two days of testing (three hours/day for two consecutive days). My brain was mush after the second day. The following is what the testing consisted of: 1) IQ test, 2) Impulsivity measure, 3) Language skills (She asked me to define some uncommon words), 4) Mathematical skills (About 30 math problems), 5) Cognitive skills (She asked me to assemble certain shapes and sizes-puzzles). And some other things that in totality represented the ADOS.

Two months later, she handed me three copies of the test results (The report was about eight pages long). We spent the next hour going over the report. This was the gist of it: I was diagnosed with ASD (Autistic Spectrum Disorder-Level 1) with the following comorbidities; ADD, OCD, SAD, MDD, and GAD. The proverbial "cat" was out of the bag! Finally! I felt a remarkable sense of liberation. The dark passenger that haunted me all my life was now illuminated by the light of knowledge!

This what I suggest: 1) Do you research, that is understanding the common traits of an autistic along with common comorbidities (You tube has many excellent videos pertaining to autism and Aspies (A person on the spectrum). 2) BE ASSERTIVE! (Assertiveness is defined as, "requesting a need be met in a firm yet mannerly way"), 3) Go to a behavioral health specialist to explain your situation (LCSW, counselor, psychologist, psychiatrist) they will be far more likely to take your request seriously. Typically, seeing a behavioral health specialist does not require a referral (you might want to check with your insurance first). And lastly but not least, 4) Don't take "no" for an answer. You have a right to know what it is that is ailing you. Best of luck on your journey. You are appreciated.

-MSGSTL

[Jaco2016 in reply to MSGSTL]

Hi,

Thanks for your post. You mentioned they tested IQ, math, etc.

Did they do any social awareness / reading facial cues/ body language etc testing ?

How has having an official diagnosis helped you?

- Jaco

[MSGSTL in reply to Jaco2016]

Hi Jaco!

You ask some good questions. Most of the test follows a formula prescribed by the exam designers. I have heard of preliminary testing that can involve identifying pictures of people with different facial expressions. As for me I told her about my social deficits during the intake process (problems in social situations, few friends, missing cues from others, being alone frequently) They also used my mother as a collateral witness in order to explain how I acted as a child. They don't really need to do testing for non-verbal communication-its kind of a given. They packed a lot of stuff into those six hours so who knows maybe they were testing for that all along. By all means, bring up whatever concerns you-no two Aspies are alike. We each have a unique story to tell. Get it all out in the open during intake (at your first meeting with the behavioral health professional).

How has having a diagnosis helped me? Hmmm...First of all you are putting a name to a state of mind as well as a lifestyle. Autism effects every facet of your life. Right? Wouldn't you want a name to go with your social difficulties? Secondly, once your sure it is autism there are many lifestyle changes and strategies you can use to ameliorate the difficulties your having now. Third, being diagnosed gave me a tremendous sense of relief. Things started to make much more sense. Why do I crave solitude when everyone else is getting ready for a night on town?

Before my diagnosis, everything was my fault, "Why do I prefer to stay at home when everyone else is having fun?" What the f*ck is wrong with me? I would beat myself up over preferences I had. Now I know the reasoning behind my actions. Fourth, it opened up a microcosm of people just like me I realized that I am never alone. Perhaps the best outcome from my diagnosis was acknowledging the fact that I was born this way. I did not choose this for me. There was no choice that I made. It is just the way I am wired that's all. Nothing more. Nothing less.

Lastly, when you know you are autistic you can bury your head into all of the information that's out there. For example, being autistic has its upside. First of all, we have better "rote" memory that neurotypicals (normal people). We retain information better than most. Secondly, Aspies typically have a higher than average IQ. When autistics have a goal in mind we tend to it until its done most excellently. We are loyal, dedicated, have a strong work ethic, and stick to our commitments. We are sticklers for detail and rarely take "I don't know" for an answer.

For you Jaco, I believe a diagnosis would answer a lot of questions in your life. Even if you are not on the spectrum, it's a possibility you can cross off your list. Something is causing you significant anxiety and depression. The time is now to find out what that something is. Remember: It is NOT your fault. Start the journey to a happier, healthier, and more fulfilling life. Throw fear and doubt out the window and take back your life. It's all about you.

Write anytime.

-MSGSTL

[Jaco2016 in reply to MSGSTL]

Thanks for your thoughtful response MSGSTL. I will discuss this with my therapist this week when I see him. I think a diagnosis could help bring some relief. I have already been diagnosed with dysthymia and GAD but like you said learning what actually causes that could be helpful. When I was a kid I had terrible shyness especially around groups of more than a couple of people. I would blush so easily especially when called upon in class. I also had terrible hyperhydrosis and would avoid social situations because of really bad hand sweat. I also had trouble making my needs known and verbalizing those needs, especially at school. In kindergarten I peed my pants I class because my teacher had a system for when we could go to the bathroom that I couldn’t figure out and didn’t know / too afraid how to ask how it worked.

As an adult I have a hard time relating to people in typical ways. My sense of humor is very “juvenile” and the only “friend” I have at work is someone who I joke around with by making fart noises / belching etc. (I’m almost 40 years old and he’s 50!). Otherwise I find small talk really difficult and I find people stressful to be around because I’d just rather be alone and reading or something!

I do have social inclinations though- I was social enough to find a wife and together we have 4 kids! I do have a good job but it is working with the public so it can be very stressful and exhausting .

My grandma and aunt were diagnosed with schizophrenia when I was young. My grandma was institutionalized for many years and my aunt was just heavily sedated on meds to control hallucinations. My dad and my older brother both have a really hard time making small talk and relating to people. My dad was always super quiet when I was a kid I almost never heard him say a word. Anyway there is a lot going on in my family and I know that genetics don’t determine destiny but I wonder if their is a link between family history of schizophrenia and autism? Anyway thanks for reading. Have a great day!

[MSGSTL in reply to Jaco2016]

Hi Jaco!

At the turn of the 20th century, autism was considered a sub-set of schizophrenia. So, your grandmother and aunt could possibly have been autistic. It wasn't until 1977 that researchers discovered a genetic link to autism. Autism is genetically linked and often can be passed down to future generations. Don't freak out about your children. They are probably fine. Your wife's genetic makeup plays an important part in the heredity of autism. I wish them the best.

My father is much like yours-emotionally distant and very quiet. I believe that he and my youngest brother are probably on the spectrum. But get this: my father was a world-class research chemist with over 250 patents to his name and my brother has a Ph.D. in mathematics! Just goes to show Aspies can do incredible things. It is that laser-focus we have towards things that tickle our brains!

As for your juvenile behavior, it might a case of asynchronous development. Here you develop normally in many areas (language for instance) but lack development in other areas. In my case, I lack both emotional and cognitive maturity. Asynchronous means you develop in certain areas faster than others. So, you don't develop in areas particular to social engagement but your fine in small groups with those you know. Thankfully, your can work in the areas you feel you are lacking. Fart sounds huh? Maybe take that down a notch. But if it's fun and makes you happy go for it! I wish you the best at your next therapy session. A gentle reminder: Be assertive! The therapist works for you not the other way around. Sorry for running my mouth off. It's just I have a passion in seeing those who might be living with autism getting the proper diagnosis in order to live their lives to the fullest.

Best of everything. Peace.

-MSGSTL

[Georgiamiaf]

Thank you. This is so so helpful. There is a Autism centre near me that specialises in support and assessment so I think I’m going to give them a call. I’m glad it worked out for you