Am I Ready for an Autism Diagnosis?

One of the most common emails I get from readers revolves around one question. People reach out to me asking, “should I get my child diagnosed?” or “should I get diagnosed?”

Unfortunately I can not answer that question.

The decision to seek out an Autism diagnosis is a very personal one and you must search inside yourself and look at your own personal circumstances to decide if getting diagnosed is right for you.

Just because you are not ready to get diagnosed today does not mean you will not be ready to get diagnosed in the future.

I am diagnosed because getting a diagnosis eventually was right for me, but when I first discovered my Autism I was not ready to be diagnosed right away.

At first I was in denial and did not understand Autism. I was not ready to talk to a psychologist because I was still lying to myself that my symptoms were non existent or that there was some other explanation for them. Autism seemed so final I was not ready to accept it.

When I started to think about diagnosis I quickly realized that there was a very limited pool of doctors who were qualified or even had experience with adult women. None of the adult Autism doctors I found took insurance. If you do not live in or near a big city you may be taking a long drive to see a doctor.

Getting an adult Autism diagnosis can be expensive. I’ve had people tell me they paid out of pocket $800-$5000 to get diagnosed. Because a lot of the Autism specialists are out of network, insurance companies will often leave you with the fees.

Before I started reading about Autism and talking to other Aspies I had a hard time describing the feelings and things that were going on inside my body. Reading about Autism was like unlocking a key that let me start talking (mostly typing) about what has been going on inside me my entire life.

I have alexithymia. It is part of my Autism that makes it hard to describe my Autism. I have had to teach myself to describe my feelings because if I don’t consciously ask myself how I feel – I don’t know.  Before I started asking myself this question I never would have been able to explain what I was feeling because people always told me how I was feeling growing up.

People told me the wrong things about my feeling sometimes and because of my alexithymia I believed them. Because of this some of my feelings and emotions got confused. I needed to untangle this mess before I could accurately talk to a psychologist about my Autism.

Once I had finally straightened all of those things out I felt like I was ready for an Autism diagnosis.

I journal a lot and that has helped me tremendously in life. People with alexithymia should write. It helps us work out our feelings.

I took a 10 page paper to my psychologist explaining my life story without using any of the Autism terminology. (Doctors seem to be put off by laypeople who sound too scientific. They think we are up to something when we use big words.)

The doctor tested me and I answered her questions honestly. I was extremely nervous the entire time – afraid she would come back with a wrong diagnosis.

After our first meeting I had time to think on her questions and sent her another five page paper further explaining things I could not express face to face.

The way she had asked about stimming had confused me and I had under expressed how much stimming I actually do. (I need questions asked the correct way or I get confused sometimes.)

If you can get your doctor’s email address or bring in typed papers I would STRONGLY recommend doing so. Because I take in information and do not process it right away, sometimes on the spot conversations are impossible. I made a point to mention this to my doctor.

Tell your doctor EVERYTHING that you have trouble with. Make a list.

Autistic burnout (sometimes called Autistic Regression) is a real thing. All of the sudden all of my childhood sensory symptoms were back and worse than ever. It seems like stress and change can have a huge impact on this.

In the end getting a diagnosis was right for me when I started having trouble coping with the real world.

My diagnosis protects me from liability if I ever have a meltdown in public or have sensory problems that cause confusion. It lets me ask for small accommodations at work – like sitting in a quiet spot with natural light.

Now that I am diagnosed I can ask for things – small things that were refused before – and people are supped to give them to me.

I won’t ask for much. I don’t want to take advantage or draw extra attention. More than anything I just want to be comfortable in a world that was not built for me.

 

 

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23 thoughts on “Am I Ready for an Autism Diagnosis?”

  1. I agree that journaling helps a lot as well as turning in written ‘papers’ to express oneself better. After I started writing prayer journals and emailing my clinical counselor, communication was a lot smoother, and I can express exactly what I want perfectly, especially without the pressure that is often felt in person.

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  2. An official diagnosis is something I have pondered, put aside, pondered again. Part of me feels okay just finally knowing and leaving it at that. I cope fairly well, after all. Not to mention the sizable financial and doctor availability issues. But, part of me feels “illegitimate” when I share with people that I’m autistic without that official label from a doctor. I always feel that need to overexplain myself. ( get so annoyed with myself. Lol.) Perhaps, someday, if everything were to align itself, I might pursue it further. But, for now, I guess I will keep on keeping on. And journal lots! It helps me so much. 🙂

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      1. Understandable. If I was still at my old teaching job, I probably would find it much more urgent. I am in a pretty good position with my book and helping my husband with his business. We have both survived the traditional working world but thrive on being our own bosses. We aren’t rich, by any means, but we are happy. 🙂

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          1. So true. I understand.Writing was all I ever wanted. I never thought it’d happen for me, though, and, then, suddenly, there was the open door. Keep looking. You never know where that door could open for you, too. 😉

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  3. How did you find a specialist?
    I think I’m ready for my diagnosis (I at least really need some sort of help with the world), but it’s so overwhelming. My husband’s EAP initially gave us a list of doctors that had no experience with autism at all and the one I liked wouldn’t see me because of this (probably a good thing).

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    1. Depending on where you live your local government or town may have an Autism support group. I emailed and asked for specialists in Adult Autism specifically women. There were only 3 in 100 miles. You may have to travel but definitely find a Psychologist with an Autistim speciality.

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      1. Would the support group listing just be available at the city hall or something? I’m in a very large town actually (part of the state capital metropolitan area). Sorry to pester you with so many questions, you’re just the only person I’ve “met” that actually has answers!

        Liked by 1 person

          1. Yeah, for sure. Let me know if yoi need anything else. Definitely want an Autism specialist in the very least. They may not take insurance so be careful on that part. . . So if you find someone who seems to understand Autism in adults it is worth a drive.

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  4. I’ve asked all my doctors to all of to let me email an agenda before appointments because I’m overwhelmed by talking. Writing is far easier. Auditory processing is really hard, I space. I need to watch lips. I don’t know my emotions until I email people or write letters until I began zen mindfulness meditation. It take a lot of writing to figure out what’s going on with me. That’s aleximythia? Weird, no clue. The medical stuff doesn’t explain it well. I just had a penpal tell me I had an amazing gift for expressing emotions in writing he doesn’t. How much have i been doing to pass? Or self care unknowingly? I’d do a notebook a month since age 12. Spiraling in until I got the right feeling in my gut.

    The medical stuff doesn’t explain autism well at all. Amethyst has affect and isn’t monotone.

    So are there other women who assumed all her free drinks were from exceptionally kind bartenders, and no idea why the stranger at the bar kept trying to make inane small talk? I only recently figured this out and I’m 45. Are others that clueless with men?

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      1. My mom says I can get the book you recommend now! Yay! The medical jargon I’ve read doesn’t at all match what all of the people you highlight on your blog say. I would have never guessed anyone was talking about autism. THANK YOU. Since getting Lyme and malaria and being bedridden I can’t stim, no jumping, no spinning (I’d fall down), no handwriting (arthritis), no keyboarding (but handwriting works better), no drawing, MCS means I can’t go outside so no nature or walking, now can’t be near cats – no ink due to MCS took away my cards even.

        Since my genetics specialist to help with MCS detoxification and Lyme Herx reactions is actually an autism specialist pro-autism (her whole family is autistic), I bet she could help me find new ones….

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          1. It is! It’s not scary. It’s nothing new, it’s just what I (and many of my friends) are like. The Mac and PC comparison is so helpful. The naivety section really hit home, now I don’t feel bad for it. And it has good legal info just because I support whistleblower hackers in prison and I’m understanding how they can be “too trusting” and also the agreeing to false charges. I want to get it to Lauri Love’s lawyers because a British depressed Aspie who joined in on a prank to use FBI cyberspace to put up a 1980s videogame being extradited to the US where he’s facing 98 years is insane anyway, but I know me, I know my father, my cousin, we would never have thought there’d be repercussions. It’s weird that my intense empathy for Love (knowing how he feels, what happened etc) was what led me to find out I do have Aspergers. Just at the same time you like something on my blog which made me go to your blog and totally shocked me because everybody seems so normal and that it was kind of disconcerting to have my brain in other peoples bodies after always being ” weird” and nobody understanding, right when my new doctor is explaining how the autism spectrum in my family is probably part of the structural differences that cause me pain, and I mentioned to her educators saying that I had no filters and she said that’s kind of the whole definition LOL and then realizing that aleximythia is not a prerequisite – the medical model just doesn’t understand us. I’m finally understanding my father has feelings in fact they are so intense he just shuts down. And then I told a close friend that I thought I might have Aspergers and she said that she didn’t know how to bring that up before. !!! It’s that obvious? Also my ex-boyfriend kept forgetting to say ADHD and instead would say Aspergers and it drove me crazy but he swore all the time that I told him I Aspergers so I think he just knew about it and I’m kind of the last one to know. Then looking through this book and realizing that other people do not just break into cartwheels and that singsong voice which makes me feel better does not accurately display the emotion I am having even though the words seem clear enough and also that inability to lie which I keep telling people is the most important skill to have a job – lying – and the bounce walk, the totally open trusting nature and that none of these are bad – they’re only bad if other people hurt me with it. But I’m not doing anything wrong . I don’t like Smalltalk and everything you are not supposed to talk about is the interesting stuff so I don’t care about social faux pas’s I’m more interested in having an interesting conversation with somebody. So she is the best introduction I could’ve gotten. Thank you! If I had read something medical again I wouldn’t have seen myself in it just like I never have. Because they’re just recording how it looks to them , they are not inside of the person so they make it sound like it’s really boring but really it’s a lot of fun and it’s not detrimental unless people try to make me be another way . That’s where it is debilitating. I’m going to give it really good reviews and tell people about it because it’s not scary stuff like I thought I would read where it is all pathology. I’m really grateful that somehow you showed up in the mix of all of this because I probably would’ve gotten some terrible book that scared the hell out of me ! So thank you for helping a sister out 🙂

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          2. Thank YOU SO MUCH! I am beyond happy that you have such a positive outlook after reading the book. People pathologize us too much and doctors speak from what they don’t understand. That is why I write. When I found out about my Autism I became extremely depressed, because of all the pathology online and “official” websites. I really want to change that so others don’t have to go through the same things. We have to speak up until our own words outnumber the words of doctors online who say we are broken. So happy for you. Congratulations!

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          3. For the first time in my life I feel normal 🙂 it’s actually quite a lot like MCS, if you have MCS and you are not in a toxic environment if you don’t have Lyme disease like me you should do well. So it’s the same with having a brain that’s different with how it processes . As long as we create the environment that work for us there’s no problem. It’s just part of the cookie-cutter mentality. And also the moneymaking mentality. I don’t know if you’ve ever read the making of an epidemic which explains how psychiatry has gotten to the power it has and also how there weren’t that many people with diagnoses for something like bipolar until the creation of antidepressants , there’s a whole bunch of other things but there’s never been one study that proves there’s a biochemical reason for anything in the DSM . In fact the national mental health institute for the United States now has questioned the validity of the DSM because no one has shown any proof . So hopefully that will be thrown out. But I really understand that if people knew that being autistic is actually really awesome and I wouldn’t change my brain at all, that would mean no funding for cure of incredibly creative, bright thinkers who have special ways of perceiving the world . Why Google is involved with wanting to eliminate us from existing is strange. I would guess that Google was completely reliant on autistic people for most of its creation so that is a paradox. And I want to when I feel better divest myself totally from Google and get rid of Gmail and all that other stuff. And reading about autism speaks ! What a horrible horrible place. I actually have been putting together a 100 page handout cut and paste things from books about disability rights , autism not being a disability normally, what the psychiatric industry is, the nursing home industries power that makes it so independent living does not get any funding , and a whole bunch more because it’s basically disability rights 101 . For me to give to activist friends who say “solidarity” but they know about every struggle except mine. So let’s see stuff about my issues. I want them to make memes about MCS, about the reality of autism, about how accessibility to a meeting is not enough, because a lot of the “community” happens outside of the meetings so barriers of access mean a lot more than they think. And for them to know about incarceration of adults just because they got disabled physically and have no control over any aspect of your life now and also things about how some people who are autistic like myself with this can be very naïve and trusting and the police know how to take advantage of that, with what I read about in that book about confessing to things we haven’t done. So everything connects. so many people who have MCS also see the doctors that treat severe low functioning autism I’ve learned a lot about how pollution and heavy metals are the key thing to deal with but also from friends I’ve heard about miracles happening with antiviral and antibiotics for the gut. And I’ve seen it in their children. And one thing I wonder is because in a lot of ways being autistic is like not having the same filters with things coming in or going out necessarily , does that make us more susceptible to pollution? And is that why we are seeing so much more low functioning autism out of the blue? Because it is considered an environmental illness . If you are pregnant and live next to a highway you have a 50 percent chance higher than someone else of having a low functioning autistic child. I’m guessing that child would have been considered Aspergers if not for all of the toxic metals and other things that impaired the fetus. Because we’ve always been here. But we haven’t been low functioning like this before. Not in these numbers.

            Amazing thing happened when I was doing my ancestor ritual was I understood the first time my grandfather who died before I was born . When he had emphysema he wrote these really cute stories for my grandmother. And he also wrote almost 100 years ago the genealogy as stories. He was in advertising and when Pepsi suddenly changed to using “Pepsi generation” my father said that grandpa didn’t know what to do. It didn’t make any sense because it didn’t describe the product. Advertising changed into selling lifestyles not products and he was really confused. Why would anyone buy a product that you don’t know about?
            And I had learned from my uncle and cousin that he was taken in by conmen three times and they lost everything. My cousin figured he must’ve been a con man himself because the odds are strange. However having that really trusting personality myself and not reading clues about manipulation very well I understand completely. And I just started crying because I’m so grateful that he gave me my brain. And for the first time I felt connected to my family and my heritage. His father and brother were among the very first mechanics for Ford, although the background was farming. And then they were the teachers at schools for mechanics the very first ones. So I can see with all of the musicians, mechanics, academics etc. how we fit together even though everyone is so different and we don’t make a lot of sense to each other . Now they all make sense to me and it feels really good.

            And the stuff about not having empathy, that’s insane. It is very easy to see injustice with this kind of wiring. It’s really easy to see where things and systems have gone wrong . Including justice systems and education systems and welfare systems and everything else . And I think that sometimes things hurt us so much especially how frustrating it is to try to implement solutions that the pain causes retreat . That’s really high empathy. Because the exact same advice I’m finding in the books written by people who are autistic is what you read in books for people who have really high empathy! It’s the exact same stuff! How strange that psychology has formed an opinion by looking at the outside and not talking to the inside. What they say about us is as insulting and degrating as what they used to say about African-Americans. Like trying to prove that there is some sort of inferior medical reason to support racism. Same thing with women . Same thing with LGBT. And I’m really angry that they would want to do eugenics to get rid of me. So whatever the organizations are that are working to stop that I would really like to know about because I don’t want the world without people like us.

            Also if you could tell me the names of good evolution and genetics books I would be really grateful. That’s something I’m really interested in because I know that evolution created us to be in small tribes with diversity because one human being alone is not going to survive.

            And I don’t know if you have noticed this but the blogs and websites and stuff where is autistic people talking to other autistic people , there is no flaming. No incredible emotional attachment to an opinion that has no internal logic. That person will die holding onto . People are polite ! I’ve never seen anywhere else online. Just thought I’d share that.

            This is one of the best things that’s ever happened to me

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          4. Thank you so much for sharing all your wisdom. I don’t have a list of the books on genetics, but I am sure someone out there does. Certainly there must be great resources online. Its true. Aspies tend to support each other not tear each other down.

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