Struggling to accept my autism diagnosis

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I am in the in-between category of Broad Autistic Phenotype, with a score of 28, which has remained constant. What has changed is my degree of independence between then and now, but I still have the same basic traits.

Absolutely! You wouldn't likely have thought of having ASD as even a possibility as a child - you learned strategies to fit in, even though it might not have come naturally to you. There would be no reason at all that you would have thought of that as masking. You probably even thought everyone did it, but others were maybe better at it than you.


While I don't think I often make total eye contact with people unless very explicitly thinking about it, I do think that, as long as I'm very comfortable with people, I look close to their eyes (their mouth, their forehead, or the wall just behind their head). I've even asked people whether they think I'm making eye contact when I've been looking at the wall behind their head, and they tell me that yes, I'm making eye contact. So many people can't tell the difference between looking close to their eyes and looking directly at their eyes.

But when I'm uncomfortable, I'll often be looking nowhere near the person I'm talking to. My head will often be turned completely to the side when the person is in front of me. Sounds very much like what you're describing.

It is not uncommon for Autistics to mask or pretend to be normal, copy others behaviors for year after year. After doing it for so long and so often it might seem natural or normal. That does not mean it is not exhausting and damaging to your mental health. It can lead to not knowing who you are, to having the identity crisis you seem to be having.

One does not have to have every autistic trait to be autistic.

As said earlier as one gets older there are more expectations and responsibilities. With these expectations and responsibilities autistic traits that were not noticeable and manageable become noticeable and unmanagable.

Firstly, because this is your first post, welcome to Wrong Planet.

I may not be able to provide you guidance, but I will try. This is from my perspective. So please don't take any offense.

Aspergers is manifest differently in males and females. In general, females tend to rely more on social masking. They try and blend well into society. But social masking takes a lot of energy and focus and sometimes as they age, it becomes rather difficult to continue masking and the stress evolves into a variety of mental health problems such as depression. But I tend to think in your case, the cause of your current dilemma is primarily due to the stress from teaching. As you become stressed the Asperger symptoms that you hold buried deep within you come to the surface.

So the key is that if you can learn to manage the stress load properly, then those characteristics will fade away and become dormant again. So how can you manage your stress loads? I will give you two strategies for focus your attention on.

The First strategy, focus you energies on obtaining an adequate amount of daily Deep Sleep (which heals the body) and REM Sleep (which resets the mind).

But what is an adequate amount? The average adult needs 7-9 hours of sleep at night. Once a person dips below 7 hours of sleep at night, they start to experience negative effects of their physical health and mental acuity. The amount of deep and REM sleep an average adult needs will be about 20-25% of their total sleep, depending on how many hours they actually sleep. At 7 hours, that would be approximately 84 to 105 minutes. Source: How Much Deep And REM Sleep Should You Be Getting Each Night? So those are the metrics that you need to track.

So how do you meet these metrics? Some simple answers can be found on the Internet. Such as 14 Things To Do Before Bed That Will Put You Into A Deep, Restful Sleep But your exact roadmap to obtaining adequate Deep and REM sleep will vary. It is not just rolling into bed at an early hour. I minimize light, and noise. For me I have found that a waterbed provides me a great nights sleep and generally I am asleep within 5 minutes after I roll into bed. There are a variety of tools that can help. Items like weighted blackets. Try them and tailor them to your needs and check the metrics to make sure they are moving in the right directions. Some Fitbits can provide you a daily sleep analysis.

The second strategy is to learn how to vent stress. This strategy will be a little more difficult to explain, so I will point you to a few books that will help to explain this in a little more detail. First off, the human brain is a composite of brain elements. These can be thought of like layers of an onion. There is the core brain which is similar to your brain at early childhood even before you learned to speak or write. The next layer or middle layer is the brain that contains your fight or flight response. Stress energy is stored in the limbs. You have 5 limbs - your two arms, two legs and your neck. Your outer layer is called the social brain. Stress is cumulative in nature. So when you vent stress you must vent across these various layers. So to start off with I will recommend the book by Peter Al Levine called "In an Unspoken Voice."

Stress can be vented by exercise, but it is a particular form of exercise. So in your core layer, stress can be vented by producing a shiver in your body. This is the means animals use to vent stress in their core and the methodology also works in humans. So I recommend you read "The Revolutionary Trauma Release Process" by David Berceli. The book contains step by step process that shows these exercises with photographs to lead you through the process.

In your middle layer, when your body encounters a threat, your body reacts with a fight or flight response and triggered the release of hormonal chains such as adrendaline release. Any unused hormones are stored in your muscles and nervous system. These can be vented or purged from your body by exercise but it must be a certain type of high intensity exercise. Light and moderate exercise normally only reduces stress levels for a few minutes. For the stress reduction effects of exercise to be long lasting, one needs to perform maximal or supramaximal exercise. This is exercise where the intensity or individual’s maximal oxygen uptake (percentage of VO2max) is 100% or greater. Examples are sprints and power exercises.

So in your case one method of producing a high intensity workout might be a Zumba dance workout and really get those arms and legs moving. That still leaves the neck, your fifth limb. The best way to vent stress in this limb is to scream at the top of your lungs. But that must be done in a socially acceptable manner. For example one outlet because your are a teacher, you might attend the sports game and cheer on the schools team at the top of your lungs. Or you might turn the music on when your are driving home from work and sing along very loudly.

Last edited by jimmy m on 28 Jul 2019, 12:55 pm, edited 1 time in total.

Wow Jimmy M. You know lots!

Thank you for your very detailed post and history.

I hope you don't mind me putting your post text back here, but divided into some paragraphs which will make it easier to follow. there is a lot in this history.

Being on the borderline does not make you unwelcome in Wrong Planet, quite the reverse, you may be able to bring insight from autistic and neurotypical viewpoints to our discussions.

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This is long, so please bear with me. I am trying to provide some background information. I started seeing my therapist on December 7th, 2018. I was in the middle of my first year of teaching high school math, and I wasn't handling certain aspects of it very well. The struggles of my students were hitting me SO hard and I would often go home and cry about their lives. Planning was difficult for me. I kept getting caught up in the details of making it perfect, but knowing that it never would be. I spent hours planning and didn't understand how some of my coworkers could plan a lesson for the next day in less than an hour. I was overwhelmed and often thought of crashing my car. I knew that I wouldn't ever do it, but I thought about it ALL the time.

I told my old college professor how I was feeling, and she asked me to start seeing somebody. Guilted me into it by asking how I would feel if one of my students came to me feeling this way and what I would want them to do. I had a long list of requirements that I wanted my therapist to meet. I won't go into that right now. I was having a difficult time finding one that seemed acceptable, and was about to settle with one until I somehow managed to come across the guy that I ended up seeing (I will call him Dr. K).

Dr. K seemed perfect, but his office is over an hour away from me and he doesn't accept insurance. I chose him instead of the lady I was going to settle with because unlike the lady, Dr. K had it set up to wear I could request an appointment online without having to call him. Perfect. So I went. I felt comfortable with him right away, which rarely happens so I decided to keep going despite the cost and time associated with going.

On March 6th, 2019, Dr. K asked me if I had ever thought that I might have autism. He said I had some traits that were similar to traits seen in autism. It had crossed my mind once when I came across a post on facebook that seemed like me, but it seemed silly so I had forgotten about that until Dr. K said something. I told him about that time, but then said no I don't think I am autistic. He read off the criteria from the DSM-V and I said again, that doesn't sound like me. But when I went home that night, curiosity got the better of me, and I decided to look up high functioning autism.

Some things sounded like me. I also saw how autism is often misdiagnosed as borderline personality disorder, depression, anxiety, ADHD. These were labels that I had often wondered if I had throughout my life. What really got to me though was how aspies described their autism and how they felt growing up. Some of that really resonated with me, and I started to get worried.

Autism is deeply misunderstood, and I was falling victim to that misunderstanding. I did NOT want to be autistic. I became obsessed, and for the next week I did nothing but research autism. When I went in for my appointment the next week, I spoke (cried) to Dr. K about my fears and what they would me and he reassured me that it wouldn't change who I am. After that appointment, I decided that I wasn't autistic. There were too many things pointing away from it. Even though I had come to that conclusion, autism still crossed my mind repeatedly. I thought about previous (and some current) experiences in my life and wondered if autism would offer an explanation.

Every so often Dr. K would ask if I was still thinking about autism and possibly taking the assessment for it, and I always responded that I planned on taking the assessment eventually, but only so that I could get the "definitive no" and finally stop thinking about it. Because I'm a teacher, I get the summers off. It's glorious. Dr. K works with a psychologist that specializes in autism assessments, so I was planning on taking the test with her, but her available hours don't work for me when school is in session. If I was going to take the test with her, it was going to have to happen this summer or else I was going to have to wait.

After months of avoiding it, I finally emailed her and requested an appointment. We scheduled it for two weeks later on July 19th at 12:30 pm. My autism obsession returned. I couldn't stop researching. I began to lose sight of who I am. I couldn't remember what my experiences were like before I heard of maybe having autism and so I wasn't sure if I was suddenly remembering things incorrectly or if I was possibly experiencing things differently now just because I was so biased by all that I read. I previously didn't want autism, but from all of the blogs that I read, there was a feeling of relief that came with it because it was finally an explanation, and I wanted that. I wanted it so badly and I was worried that because I wanted this diagnosis, my brain was subconsciously making me more autistic so to speak.

When I took the screeners, I wasn't sure how to answer. For example, "I enjoy social occasions". I answered with a slightly disagree. I really enjoy socializing with my friends. But I wasn't sure if it wanted to know about my friends, or other situations, and if were discussing other situations, then the answer is no I don't really enjoy it because I feel awkward. That is just one example, but I am worried that my collection of responses weren't accurate enough and led to the false positive.

When I took my assessment, I only took the diagnostic interview. It was cheaper, and I didn't see the need for the full assessment since I was truly convinced the result would be a no. The psychologist (Dr. L) met with both me and my boyfriend separately. Me first, then him. When she was done talking to him, she called me back in and told me that I met the criteria for ASD. I did not feel relief. I felt confused. I told Dr. L about my concerns that I had tricked the test somehow since I had been researching so much about autism. She informed me that her decision was based off of more than just my responses. She said that there was an obvious deficit in my eye contact. This didn't surprise me. It was one of the reasons Dr. K had brought up autism to begin with. But I feel like it was only that bad because I didn't know her and because I was nervous. My eye contact isn't bad with people that I feel comfortable with. She also started talking about how people with autism have a robotic speech. That I didn't understand. Yes, I am SOMETIMES monotone (isn't everybody?) but again I didn't know her very well and it's not like answering questions requires a change in tone? I have been told my whole life that I am talking too fast and I am pretty sure that my tone changes when that happens. Other people have told me that my tone changes. Those reasons didn't seem good enough. She told me I could email her if I had any questions. I did have questions. So I emailed her. And she did a terrible job of answering them in my opinion.

I stopped emailing her after she informed me that she would be forwarding my emails to Dr. K. I am just really struggling to accept this diagnosis for so many reasons. I don't feel like there is enough evidence. And some things don't add up. I have looked through my baby book, and my mom wrote that I cuddled into people, looked at peoples' faces when they spoke to me, and some other things that didn't seem characteristic of autistic children. I know for a fact that I did imaginative play when I was younger, both by myself and with friends. I don't prefer being touched now, but there are plenty of pictures of me growing up where I am being embraced and there are no signs of discomfort. I feel like I am REALLY good at reading people and being able to identify when they are not okay.

I got in trouble for talking all the time when I was in school, and it was never about a limited subject. It's not like I sat there and talked about Harry Potter all day. I had normal back and forth conversations with classmates and I don't recall feeling uncomfortable in the process. I don't have issues breaking the law at times. I am a major speeder and I text and drive sometimes and even though it made me feel bad, I occasionally stole when I was younger. I also drank before I was 21 and tried marijuana even though it is illegal. I don't like jaywalking, but I have been forced to do it enough by people that I'm with that I do it on my own now.

I am only really bad about eye contact when its with people I don't know. I get really attached to people and I really care about what other people think of me and I love hearing when they think I am great or loved or if they're proud of me and I do share my accomplishments and the things I like with people. I say um ALL the time and I keep reading the autistics use less filler words like um than NTs. I have read how some of you describe your language issues, and I don't feel like I have that. I sometimes forget the name of something and will refer to it as a thingy and I sometimes blank out on what I was going to say, but that is about it. Sometimes I am expressionless, but I am also very expressive at times too, and not in an exaggerated way. I wasn't bullied as a child. If anything, I might have been the one that was mean to others at times.

I got along with people from all sorts of different groups in high school. I was well liked by many and I socialized well with my peers. I had friends all throughout my life. I feel like I have way more problems now that I am older than I did when I was younger and I feel like it should've been the other way around.

Yes, I recognize that I have some autistic traits, but I am really struggling to accept this diagnosis because some of it just doesn't make sense to me. When I took the aspie quiz, I got an aspie score of 104/200 and an NT score of 102/200 and the description read "you seem to have both neurodiverse and neurotypical traits". Everything for me feels situational. Sometimes I struggle, sometimes I don't. I hate that I am right on the edge of both aspies and NTs. I feel like because of this, neither group will ever accept me as autistic, and if nobody else can accept me as autistic, how can I learn to accept myself that way? I'm sorry this has been so long. Thank you for reading this far if you have. I am just having a really difficult time with this. I want to accept the diagnosis as being right.

Thanks for reaching out.

I get that you're feeling conflicted, and a lot of it has to do with the stigma you've carried in to this situation. Everybody carries it, more or less. Almost all don't know about it. I didn't, until my diagnosis aged 38.

I think three points are key to share with you now.

1) you don't change.
Like others said, you're the same person. Learning more can only help, I firmly believe.

2) therapist
The thing to watch out for when dealing with adults/females and diagnosis is that some "professionals" carry an old and wrong-headed idea of what autism looks like. A lot of us, diagnosed, find that learning about autism rings true because it is just so useful in explaining our lives and what we have to do next. The mere fact that Dr K didn't think "you make eye contact, so you can't be autistic" ..etc tells me you might be on a winner with them. At the stage where you are now, finding another doctor who says "that's not you" is quite risky, due to what I'll mention in point 3.

3) burnout might come for you
If you are on the spectrum and don't address it head on, you might be fine for years then break down. Worse, you might find you've spent your best decade on things that don't matter much in the big picture.

My crisis came at 38 when things changed at home and work, and I was pitched into near fatal burn out.

To survive and not lose it all, I had to learn a lot about burn out, how to deal with it, and finally had to learn a lot about my autism.

To conclude

If the tests indicate you are on the spectrum, or even just close, I think it's critical to your future that you learn more and test those learnings to see how they fit your life experience. If they prove to be useful, don't turn your back on them, lest dire consequences follow

Folks like myself, going on this journey, come to understand that the social model tends to ring true. We're not broken, but the unknowing majority misunderstand us daily, and this is the root of most of what's wrong, particularly when mild traits are involved.

Know yourself better. Treat yourself better

In closing, let me recommend this video. It's long, and worth every second.
https://youtu.be/qpitsA-0pBQ

Best of luck.

kmarie,

I taught English at the junior college level for a year and identify with some of the things you said. Planning out the lesson was actually the easiest part of teaching for me and I had empathy for my students, who came from some tough backgrounds. One thing I had trouble with was listening to excuses as to why they didn't have their homework done. If they were going to learn, they needed to do the work. Those who put in the effort improved significantly.

"Autistic" is a somewhat arbitrary label whose exact boundaries change with each edition of the DSM, and in any case are somewhat subjective and are interpreted differently by different therapists. Testing procedures have emerged in an attempt to standardize things, but the tests are far from perfect, and there is still room for "clinical judgment," which is intrinsically subjective.

So, unless you need the label "ASD" for some bureaucratic purpose, I would suggest that you try not to worry too much about the label. Even if your testing in October ends up with you being classified as not having ASD, you'll still be welcome here on Wrong Planet as a person who fits the "broad autistic phenotype" (BAP), and you'll still be welcome to post here about whatever personal difficulties you do happen have in common with many autistic people.

People who were autistic-like but not quite "autistic" by the official standards of the moment have always been a part of the autistic community. Back in the 1990's such people were referred to as "cousins." See, for example, Autism Network International - The Development of a Community and its Culture by Jim Sinclair.

I still recommend that you get the full testing, though, not just for the sake of determining whether you fit the (very heterogeneous) label "ASD," but to learn a lot more about your specific strengths and weaknesses.

The only thing a diagnosis will do is to give you a starting point and a better understanding of where to find help. Beyond that, it's only you who can take that journey because Autism is specific to each person, there is no standard measure, there is no standard way of dealing with it.

Don't be afraid of a diagnosis, because it is not, nor will it ever be, something bad. You may find that you are not on the spectrum, and that's a positive. You may find you are on the spectrum, and that's a positive as well, not in the "Yay! I have Autism" sense, but in the sense that you have a better understanding of who you are as a person. As has been said, you will be the exact same person you were the day before, but you'll be armed with more information. So embrace the opportunity!

I wasn't diagnosed until I was about 40. With the diagnosis, I was able to look back and things just started to make more sense. I wish the diagnosis would have come a lot sooner because I'm sure it would have helped me understand why I did some of the things I did instead of attributing it to something negative (lazy, stupid, etc). That's not all bad, however, because it, in some ways, forced me to learn how to do things like making eye contact. I still have to make a conscious effort to do some things that others do naturally. I would have benefitted by knowing earlier. Mind you, Autism wasn't as understood to the extent it is now. I had sessions with therapists then, but Autism never came up.

It's an opportunity to learn more about yourself. Learning is an opportunity that is never wasted.

I identify with a lot of what you say here. I got a diagnosis 5 months ago and have been struggling to come to terms with it. I already tended to obsess about how I was behaving with other people, but since I started considering that I might be on the spectrum, and continuing once I got diagnosed, I now have the additional layer of thinking about how "autistic" I'm behaving and wondering if thinking about being on the spectrum is what is actually causing my behaviors. Or feeling stressed in the grocery store and wondering if it's sensory stuff or just the result of thinking about it too much. I also feel a lot of shame around wanting the diagnosis to be true, like I'm taking something that's not true and not mine. It's exhausting. I hope you, me, and everyone in a similar situation can come to a more peaceful place with it where we just let ourselves be who we are (diagnosis or not) without so much self-criticism and angst.

[I thought I posted something like this already but it seems to be gone, so sorry if this is a duplicate or anything.]

These are my own views, and not necessarily those of the mainstream (though they're not too far fetched either), but...

There was a thread while ago with a video asking, "Isn't everyone a bit autistic?" The video concludes 'no' because, in the video producer's view, autism really represents a level of difficulty that is undermined by anyone being able to relate to it.

I don't find the video producer's argument to hold water.

It is my view that there is a general spectrum of strengths and weaknesses across certain traits which exist within the human brain. People who are substantially weak across several of these traits are what we refer to as 'autistic'. This would be explained by variations in neural pathways and the density of neurons present in different parts of the brain.

The truth is that there is an extremely wide autistic spectrum, as it related to multiple sliding scales along different straights and weaknesses in different traits. These traits exist on a full spectrum which includes all people. If we take 100% as the peak achieving person who has ever lived in terms of one of these traits, and 0 being the weakest person who has ever lived in terms of a trait, maybe the average ability is roughly a 50, and anyone below 20 is flagged as clearly being autistic. But surely there are 21s, 25s, even 30s who struggle.

As such, I believe that it is possible for someone, such as yourself, to be VERY mildly autistic along only some of the traits associated.

I guess my overall point is that autism isn't really a 'yes/no' sort of disorder. I think one day we may be able to look at a person's neurology holistically, and see them not as 'autistic' or not, but rather list out their traits and rate them on each one. Each person thus has their own unique brain.