I think I may be autistic - advice?

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Hey everyone,

My name is Jess and I am a 30 year old woman living in Australia. I have been searching around for information relating to adults who have autism but for the most part I have found information that relates to children.

I have heard things over the last few years from people who have autistic friends and family and the more and more I hear about these people the more I think that I may have undiagnosed autism. I have been searching for a doctor in my area to try and get a diagnosis but it has not been easy to find someone within my budget. I stumbled upon this group and was hoping that if I could share some of my reasoning - people here may be able to assist me in figuring out the likelihood that this is something I have. I feel like I am at my wits end because adulting can be extremely difficult for me sometimes, and I have been feeling extremely isolated, frustrated, depressed and anxious. If I can figure out the root of all this I am hoping I can learn how to better cope. At this stage in my life I have been diagnosed with anxiety issues and dissociative issues (poor memory, checking out when people are talking and that kind of thing - not like a split personality thing) and I am starting to think that perhaps my symptoms are being misdiagnosed.

I don't want to write a crazy novel here - but I suppose I will very briefly discuss the things that are really big in my life and make me wonder if I have autism and hope that someone here may be able to lend me some advice on what the next steps are if you guys think this sounds familiar to you.

The first major thing that has affected me my whole life is that I rock - this is what my family calls it and my mom said that I have done it since I was born. When I was a kid I would rock back and forth laying in bed for hours and hours and sing to myself. I would make up elaborate songs. It would drive my mom nuts because my hair would become a crazy knotted mess. My mom said when I was really young I used to also bang my head into the crib or the walls - I have vague memories of being a toddler/young child and sitting with my back against the wall and banging my head against it. As a teen it got to the point where I would stop making up songs and listen to music - it would keep me up all night to the point I missed a lot of school because I wasn't sleeping. I could seriously lose days doing this, only stopping to sleep. This is something that I still do (usually just at night before sleep) and I find it very difficult having a partner because my anxiety gets really bad if I can't do this - if I go too long without doing it too I can find that I get disoriented and have trouble coping.

Another thing is I am hyper sensitive to light, sounds, smells etc. Sometimes when people are talking to me it's physically painful - like I need to push my hands against my ears to stop it from hurting as bad. My head will start throbbing and I will just wish they would stop talking. It can get so bad that I start mumbling 'shut up shut up shut up' if people are talking around me, but I only do that if I know they can't hear me otherwise I just think it. Sometimes when I am on the phone I just hang up on people because I don't know how to interrupt them and tell them that I need to go. I pretend the phone cut out. In terms of light sensitivity I have difficulty in artificial lighting and find that I work best without any lights on and can just use light from the window. If lights are like white light it is easier than if they are like a warm coloured bulb.

I go through really long periods where I can't be touched. I have had 2 serious relationships which ended because of this issue - I loved both my partners very much but even them sitting near me, sleeping near me, trying to give me an affectionate touch or kiss just makes my whole body revolt. Even just feeling body heat from them would overwhelm me and make me get up and leave. Nothing I do can control it - it's the worst feeling in the world and sometimes it can last for years. It has been so hard to watch people that I love walk away because they think that I don't like them anymore. Their loss crushes me and in both of the situations where I had been with someone for a really long time it was almost as if I couldn't take care of myself in an extreme way once they left.

I can't sleep without lots of blankets even when it's really hot. If I don't feel the weight on me I stress out and just get really anxious to the point where I won't sleep. I also can't sleep without a fan on because I need the noise. I am also afraid of the dark and have a candle or night light on. Because of my light sensitivity I sleep with a blanket over my head. It also helps me feel safe to sleep this way. I get hypersensitive to sounds too which is why I use the fan. If I go places without a fan I won't sleep and I'll just have anxiety most of the night.

I can't keep a job for more than a year and a half - it seems to be the maximum. Working 9-5 5 days a week just feels impossible to me. I get very overwhelmed and exhausted being surrounded by people, I stress and get anxious and when I have free time I like to hide in my room with the door shut and be under my covers so that I can recover. I prefer to work alone, and not be bothered by people. It's how I do my best work. I am a nerd, I love to read and do research and my last boss told me I was really clever - but I just can't seem to find a way to use my knowledge and skills in the real world.

I don't really feel like I relate to people at all, and my biggest comfort is animals, especially my dogs. A lot of people seem to like me at the jobs I have had but I also find that I end up in situations where I am bullied in the work place - it seems to be a bit of a pattern for me but I always feel like the odd one out, even when I make friends where I work. I know I can rub people the wrong way because I am really blunt and honest - I just say things how they are and usually work with facts. I have been told by a lot of people that while they think it's a good thing, they can see why people don't like me for being this way. I know that my ex used to get mad at me because he said I was rude for not ever making small talk or doing little things like greeting people at the right times, waving at certain times, or acknowledging people.

It's weird though because if I am really passionate about something then it can be quite different. Over my life I have had a few passions and I found that when I do find these things, I pursue them to beyond the point of obsession and continue engaging with them even when it's not in my best interest. I know that my last ex used to go nuts because he said I would just go on and on and on about things and he would get sick of hearing about the same topic all the time. It can be quite difficult because these obsessions can cause my life a lot of problems, like when I am working full time and spending every waking moment pursuing a passion instead of looking after my life.

These tend to be the big issues that have been interrupting my life forever - I don't imagine anyone would feel comfortable diagnosing me and I understand that, but I am hoping that people here may be able to shed some light on some of these things for me because from what I have heard it sounds like these things may be linked to autism.

I did some Googling and found this organization for Southern Australia
http://www.autismsa.org.au/how-do-i-get-a-diagnosis

I don't have any advice for getting diagnosed for you, I am un-diagnosed as well. But it seems like you definitely have the sensory problems common to ASD.

I have problems with being touched as well. Especially if I don't know that its coming. It feels like the touch stays there a really long time. But I also have ptsd problems, so I don't know where the difference is. It doesn't always work, but telling people that I have a phobia of touch, being really open in communication about it, helps. Especially with my close friends and family. When I have been intimate, it helps me a lot to tell myself that I am making the choice to touch this person, and to take breaks when I need to, slowly build up time. It never quite goes away completely, but it helps. That's just me, it may not work for everyone.

Communication about your issues is really key to maintaining any relationships. For me, phrase scripting is really helpful. For example, memorize maybe something like, "I'm sorry, but I cannot talk any longer. I will get back to you on that". Say it over and over again outloud while you are by yourself to get your mouth to memorize the movements so that when you are in stress, it will become automatic. You are in no obligation to stay on the phone with anyone when you are overwhelmed. Obviously, create a phrase that you are personally comfortable with.

I am currently making my own weighted quilt. If you are inclined toward sewing at all, you might check out a youtube video, search for Mansewing weighted quilt.
If you can find discounted fabric, perhaps using bed sheets from thrift stores, it should be much cheaper to make your own than buying one. At least from the ones I can find, they run pretty high. The poly pellets do run high to buy, but it still should be cheaper than buying a premade one.

From Amazon, I downloaded an hour long MP3 that is just white noise onto my phone for 1$. I play this with earphones in just about every night and it puts me to sleep pretty fast. Its on my cellphone of course something I can carry with me anyplace.
Other things that help me with sensory issues out in the "real world": comfortable sunglasses, industrial ear plugs, simple short hairstyle, light weight scarves to keep air off my neck, and my mp3 player with relaxing classical music.

As far as the rocking, stimming is something that is self regulating for your emotional and mental health, you just have to figure out how to incorporate it into your life effectively. Don't be ashamed of stimming. Maybe caring around a bit of play-doh or some other fidget toy would help you more at work. This gal on youtube does a great job describing stimming benefits. Her name is Amythest Schaber. Look for her video, What is stimming?
Actually, I recommend checking out most of her videos. She's well informed, and explains things that made me feel like I wasn't the only one.

If people get sh***y with you because you don't do small talk, you have two options really, ignore them because they don't deserve your attention anyway, or try to come up with a way to explain to them in a private setting, that you have social issues and that you mean no personal slight. People usually take things personally that we do or don't do when it has absolutely nothing to do with them and that's why they react badly. However, if people really are being sh***y to you, I would recommend ignoring and/or laughing at them. Neurotypicals just have no clue what its like to be atypical, and are grossly ignorant about neurodiversity because society has not taught them otherwise. It's not their fault for being ignorant, but it is their fault for taking their frustration, and being sh***y to you in return. Use your discretion on who you disclose with. Some people will be worth it, some are not.
If you really do want to make people more comfortable, say in the workplace, you could try script phrasing again, to practice simple automatic responses. But this is only if you want to. You are not obligated to go out of your way to make other people feel better. Their feelings are their feelings, you are not responsible for them. You only need to do it if you feel it would help you get along your life better.

Sorry for the novel. Hope you get something from it.

If it's free in Australia to get assessed for autism, do it as soon as possible.

Welcome to wrong planet.

From what you wrote you have a lot of traits associated with autism

I would google weighted blankets for adults.

Feel free to ask questions, seek advice or just vent. There are many here who have the experiences you write about.

Hey guys!

Thank you so much for taking the time to respond to me. I have breathed a sigh of relief mainly from the fact that there are people who can relate to me. It’s made me believe more than ever that this is something that affects my life and the idea that I could receive a diagnosis and no longer be suffering alone with this is a very inspiring prospect. It is profound to think that for once in my life I have actually discovered that there are people who understand me.

@BTDT unfortunately I am not in South Australia – I am in Queensland. I had contacted Autism Queensland but they just told me to find a psych who was qualified to work with autistic people. It was really unhelpful because it’s not that easy. I am going to visit a GP and hope they can give me a referral to someone.

@asgoodasme thank you for sharing your story. I was reading it and just so excited to be able to think “I totally understand!” I didn’t realize that rocking was called stimming. I will have to look into this. For years I have tried to google if there are other people that do this, or why I may do it and the closest thing I found was dementia patients lol. It’s clearly because I didn’t know that actual name of the behavior. I also didn’t know there was such a thing as a weighted blanket – I will have to look into this. It gets very hot here but I always have a doona on me, and I prefer to have several on top of me because it’s heavier and I hide under neath all of them with just my nose and mouth exposed to breath.

@kraftiekortie I think that if I get the right referral from a GP that I may be able to get a diagnosis at no cost – it’s something I haven’t figured out yet but I am aiming to get it underway this week. Thank you.

@ASPartOfMe thank you for your insight – I have now been looking at other posts on here and my mind is blown at how many people here I can relate to. I just watched a video about burn outs where a woman described exactly what happens to me when I am working full time in an office. I am sad to think that 80% of people with autism are unemployed or underemployed because this has been my fear. I know I am not like other people but when I am left alone to work in my own way I always blow my peers out of the water. I guess I just never fit in so it always comes down to this idea that I am just not ‘a good fit for the team’.

Stimming: What autistic people to feel calmer

Tony Attwood is based in Queensland, isn't he? I know there's little to be done for adults, but at least knowing can help. If Attwood isn't around, his clinic will have someone.

In South Australia, you need a psychologist's assessment and a psychiatrist's. Then Autism SA do the rest.

I only bothered because my story wasn't useful to researchers without the diagnosis and it offended me that adult autism is such a hidden thing

Hi @peterd

Thank you for your message - yes I have been noticing that it's very difficult to find people who focus on adults with autism and not just children.

I had never heard of Tony Attwood before but I have just looked him up and had contact with his offices and another affiliated office and he is not taking new patients and it appears that him and his affiliates do not provide free services to people on health care cards and only provide partial rebates if you visit their office. Additionally they have told me they wouldn't be able to see me until the end of July and I am hoping that I may get some assistance sooner than that.

They pointed me to a referral list on their website but the link is broken and the site is down at the moment. The best course of action for me at this stage is to see a GP and get a recommendation from there so I can ensure that whatever services I receive they are bulk billed. I am hoping I will be able to figure it out sooner rather than later.

Are you located in Australia too?

It seems that in many areas of the world it is hard for an adult to get a diagnosis of autism. They often expect you to pay for a diagnosis--but how can you pay if you need a diagnosis because you can't work and earn a living?

And, when you do get a diagnosis, it is hard to find the proper services. In the USA, services are for folks under 18.

Hi Derowen! I am a sociologist who studies working adults on the autism spectrum. I am not autistic myself, but my husband is, as are many of my family members, friends, and mentors.

Why don't you take the online RAADS-R? There are a few other good online tests (the aspie quiz is pretty good) but I like to recommend this one because I have my own scores saved and it can be helpful to compare mine to another person who has taken it.

I think the best autism resources for adults in Australia are actually at the university level. I would say the UK is the farthest ahead for pro-autism research and rights, then Australia, and I would said running third are the US and Nordic countries. So you might find some help reading some books and then emailing the authors who live over there. They might be able to steer you in the right direction.

But if I were you, I would start with some online tests to just see where you are on the spectrum.

Thanks for the information @SocOfAutism.

I ended up taking that test and scored neurodiverse (Aspie) score: 147 of 200; neurotypical (non-autistic) score: 71 of 200 and it says "You are very likely neurodiverse (Aspie)". Have you written any work on working adults on the autism spectrum?

Yep....she certainly has

Sorry for the late reply! I have a 2 year old and he is just now old enough to notice Easter, so I had to do all the Easter things all weekend.

Yes I am waiting to defend my thesis, "Autism Disclosure in the Workplace" which had a survey of 38 autistic adults who generously shared their work experiences with me and their decisions to disclose or not disclose. Once I defend the thesis, I can share the results with the WP community. I will make the thesis available to read online through my wordpress. I will also be trying to publish a shortened form of it. My next project is tentatively called "Autistic Adults in Positions of Power."

What I can share now is that the overall picture that I got from participants was empowering. What is generally published out there is that un- and underemployment is a big problem for aspies and auties, but that wasn't the case in my study, which I cannot say is representative of the US or Europe, since I only had 38 people.

I just reread your post and was thinking about what you wrote here:

Maybe you just haven't found the right job? I'll take my husband for example. He says the same kinds of things that you do, but he's been in the same job now for over 15 years. He's been sharing an office with several other people for many, many years. He mostly just reads in there, but when something complicated and important comes up, he usually fixes it because he's the only one who can. I wouldn't say they understand autism, but they seem to understand him. He has set a few rules that the others obey, such as that unexpected people are not allowed to come up and talk to him. One of the others have to jump in and get the person away from him. In exchange he occasionally does work for his co-workers. And I would say this is often the case when an aspie adult is good at their job. Their co-workers and boss will get used to them and accommodate them to keep from losing them. Sometimes in exchange for things only the aspie can do.

Maybe you need a situation like that? First get into a place where you are the best at what you do, then make your surroundings bearable (earphones, schedule social interactions for when you can stand them, bring in comfort items/stim toys, take regular breaks). Then after you have built a reputation, you might be able to get past this year and half block.