Having Received a Late Diagnosis of Autism, What do you do Now?

A few weeks ago, I received a message via LinkedIn from a person in his fifties who had said that he had just received a clinical diagnosis for autism. When he googled about what he should now do, I was surprised to learn that my wordpress blog, Life with Autism, had come up as one of the leading SEO (search engine optimization) links. Ralph, (not his real name), asked if it might be possible to have a Zoom meeting to discuss his condition. and to use me as a sounding board for his future plans. Since I started this blog as a way of helping others, I agreed.

When Ralph again posed this question during our meeting and asked what he should do now that he knew that he was on the spectrum, I suggested that he get on with becoming the best possible version of himself.

Having realized that what I had just said was likely much too succinct, I elaborated on what I had meant. Since autism is a spectrum disorder, it follows that no two of us will ever be precisely alike. We all have varying strengths and weaknesses. While some of us may be quite sensitive to doing such things as going grocery shopping, others (including myself), greatly enjoy these experiences. In contrast, while I profoundly dislike the entire notion of “hanging out” with a group of friends; there are others on the spectrum who would gladly welcome such activities.

Despite our differences, everyone who has been diagnosed with level I autism, which clinicians have described as “high functioning”, have several basic needs in common. I would describe these needs as:

• Acceptance
• The need to structure one’s life
• The development of coping strategies
• Finding employment that is compatible with one’s interest and abilities
• Building a support network

Accept your autism

Having once been active on some of the Reddit subforums for autism, I know that there have been a wide range of responses to having received a clinical diagnosis of autism. While some people, like me, may have been relieved to have finally found out why we were the way we were, others have ranted over how unfair life has been, and how very much they dislike the idea of being autistic.

While I understand that an autism diagnosis may be upsetting to some people, no amount of ranting will ever change this diagnosis. We are who we are. In order to move on and to become the best possible versions of ourselves, we must first accept and even embrace our autism.

The need to structure one’s life

To many of us who are on the spectrum, the world is sometimes a confusing place. I myself am often confused by behaviors that contradict stated rules, laws, and policies. For example, as a former teacher with the Clark County School District, district policy 5113_R.III.A.1 said that students may not have more than 20 unexcused absences for the year. Students with excessive unexcused absences are supposed to be denied credit; and yet last year I had students with 45+unexcused absences just for ONE SEMESTER who were being socially promoted at year’s end even though they didn’t have the academic prerequisites and cooking skills to succeed at a higher level Culinary Arts class. As a result of our lax standards, my former school routinely had a 20% truancy rate because there were no consequences for having violated district policy. As a Culinary Arts teacher, I then had to contend with students who didn’t have the skills or knowledge to be in an advanced culinary class. Every teacher at my school had the same issues and concerns. Can you imagine the stress this caused for core academic teachers of subjects like English, math, history, and science; all of which were subjects that students had to pass in order to graduate?

Rules, laws, and policies exist for a reason. As someone who is autistic, I find that all such constraints form the parameters within which I can function. For example, when I taught Culinary Arts, my parameters were defined by school law, district policy, school policy, the number of students in the class, the number of work stations I had in the kitchen, the length of a class period, my culinary budget, the state instructional standards, OSHA safety regulations, and the county health code for food safety and sanitation.

At home, I keep myself organized by following set routines and schedules. For example, I have been following the same basic routine for getting up in the morning throughout most of my life.

1. I wake up (often within 5 minutes of the alarm clock going off on days when I have to work or to rise at a specific time).
2. I get out of bed and perform my morning ablutions (shower, shave, and use the facilities).
3. I dress in whatever my uniform of the day is. My personal need for structure is such that I basically have several sets of identical clothing for different purposes. For example, when I taught Culinary Arts, I wore black trousers with black socks, and black skid resistant shoes with a blue polo shirt to go to work. At work, I would switch out the shirt for a white culinary jacket. I also wore a white toque (chef’s hat). On days when I wasn’t working, my default clothing would be the clothing that I wore to and from school. During the summer or over weekends and holidays, I typically wore PJs, bedroom slippers, and sometimes a bathrobe if I was just puttering about the house and didn’t need to go outside.
4. On days that I was working, after dressing, I would put my keys, cell phone, and wallet into my pockets. I also packed my lunch in my briefcase and would then leave for work
5. The ability to make breakfast at work in my Culinary Arts kitchen, was an important incentive that consistently induced me into going to work early. On days that I didn’t work, I could make breakfast at my leisure.

Whenever I returned home from work, I had a routine for that as well.

1. I switched out my shoes for house slippers.
2. I recharged my phone and put my wallet and keys in a bowl on my desk so that they would be there when I needed them.
3. I used the facilities.
4. I said hello to my cats. This frequently involved petting them if they approached me.
5. I poured myself a cold beverage with lots of ice and would then settle into my lazy boy recliner to watch the news. During this time, one or more cats would often visit me by jumping onto my lap or sometimes my chest. Since I share my home with four cats, my record for “hosting cats” has been three. My fur babies have lain side by side upon my lap, astride my stomach, and up over my chest.

Schedules and routines provide structure and order in a world that can be quite confusing and chaotic. While most of us have no control over what happens in the world, unless we live with others, we do have control over what happens within our respective homes.

Develop coping strategies

Since humans are social creatures, everyone, including those of us who are on the spectrum, need the ability to interact with others. Although I myself am quite reclusive, in order to stay reasonably sane, I still have a need to engage with others, even if it’s just virtually or over the phone. There are many on the spectrum who have far greater social needs than I do. Despite the fact that we are hampered with social awkwardness, there are neurodivergent (autistic) people who aspire to have busy social lives. Some even have a spouse and children or the aspirations to start a family.

Since we live in a world that’s dominated by both neurotypicals as well as extroverts, in order to be out and about in the world, many of us have had to develop coping strategies. Some of these strategies may include masking. Other strategies involve anticipating stressful situations so as to avoid being placed in a situation where our autistic triggers are being repeatedly hit, creating stress that could then accumulate and lead to a meltdown.

Masking is the ability to pass for normal. This is the outward facade that many of us have developed as a means of being able to be out and about in the world. We present this facade to the world as a way of hiding autistic traits that might make others feel uncomfortable. Doing this allows us to better “fit in”.

I for example, have long since learned to not flap my hands or to twitch my fingers as a way of reducing stress whenever I’m in public because these are not norm behaviors. My parents taught me this painful lesson by slapping my hands with a ruler whenever I "acted out". Keep in mind that my formative years were back in the 60's when parenting sometimes included what was then known as "tough love".

To blend in with my peers, I learned to laugh when they laughed, even if I didn't understand why we were laughing. I learned to smile when they smiled. When I became an adult and took my first elementary teaching job, I pretended interest in looking at somebody’s baby photographs even though I fiound babies to be appallingly noisy poop machines.

Another way I learned to fit in was tomimic the greetings that were commonly used by others. When a neurotypical said, “Good morning, how are you?”; my experience has taught me that unless this is a close personal friend, the person who offered the greeting was simply acknowledging your existence. The proper reply to this greeting would be to say, “Good morning, I’m fine. How are you?” Even if I wasn't fine, there was usually no expectation on the part of the other person to hear a detailed listing about whatever my actual problems or concerns were.

To my literal mindset, this exchange seems completely nonsensical but then again, I’m not the King of the Universe and I understand that norm expectations are what they are. Having long since learned that the ways of neurotypicals are sometimes strange and mysterious to those of us who have literal mindsets, there are a great many things about norm expectations that I’ve learned to ignore and to pass off as being necessary social constructs that one is expected to follow.

In terms of masking, when I taught Culinary Arts, I essentially roleplayed being a gruff and firm (but fair), chef instructor. In adopting this persona, this allowed me to emotionally distance “real me” from the stress of having to interact with others. While chef-me was fearless and had no problem with facing down and dealing with a student who had just told me to “F**k off”, real-me would have liked nothing better than to have stayed at home while avoiding any potential interpersonal conflict. Sadly, since I was not financially independent, I needed a job to keep a roof over my head and food on the table. I did what I had to do until there sadly came a time when I no longer could. I am now in the process of trying to figure out where to go from here now that I’ve left the teaching profession.

Finding employment that is compatible with one’s interest and abilities

Like most people, I have had to work for a living. Since one of my special interests has long been food, for many years I was a Culinary Arts teacher. I was fortunate to have had the ability to align a special interest with an occupation. Sadly, I had to leave this profession due to student behavior, that that is a topic of another blog article. I am now trying to figure out what to do for a living. This has been challenging since I have 32 prior years of experience as a teacher. In addition to having spent fifteen years as a Culinary Arts instructor, I was also an elementary teacher for 17 years. Aside from four years spent in the hospitality management and food service industry, 1 year spent in culinary school, and 1 year spent pursuing a Master’s in Curriculum and Instruction; the vast majority of my life has been spent in education.

My issues with trying to figure out what to now do for a living is a nice segue for the next point.

In thinking about your situation, it might help to make a list especially if you’re a visual person. Start with thinking about what you want in a job. How much do you need to keep a roof over your head and food on the table? What sort of special interests do you have? Can you think of any jobs that might align with your special interests? If not, think about what you can tolerate at work. Are you able to interact with others? Do you like a set daily routine or do you prefer to face new challenges with each passing day?

If you can’t find a job that aligns with your special interest, you have several choices.

1. You could retrain to develop the qualifications needed to get a job. Non-profit autistic support groups like NeuroTalent Works have facilitated job training in the insurance industry. Some restaurant chains like Bob Evans offer paid on-site 13 weeks of training for anyone who wants to become an assistant manager. They also train servers. Walmart has a good track record for promoting within their company. With very rare exceptions, all managers at Walmart got their start as associates. Here’s a link to a post I wrote about working for UPS.
2. You could start your own business and become self employed. I myself have given some thought to becoming a notary. I have previously written a post about working from home by running a virtual business.
3. Find a job you could do that has minimum stressors. Although I would LIKE to produce YouTube videos, I could work as a video editor, free lance writer, an instructional designer, or perhaps a human resources generalist. My nature and belief systems would make it challenging for me to be in a retail business because I’m not a great believer in selling things to people who might not need these items. I am especially opposed to the idea of selling things to people who really can’t afford to buy them.

Build a support network

Since I don’t like being touched and have never quite gotten the hang of dating and relationships, (see my video, “Men are from Mars, Women are from Venus, and I am Autistic“), I have never married and have long since given up on dating. Since I am also by nature an extreme recluse, I have a small group of personal acquaintances but no one I would regard as a close, personal friend.

Sadly my social anxiety is such that interacting with people whom I actually like is still inherently stressful. Since having burned out and quit my teaching job on October 9th of this year, not having a social network of friends and family has proven to be a disadvantage since I've had nobody to confide in or to use as a sounding board regarding my potential future plans.

I suppose that this is why we have therapists. Not only have I been fortunate in finding a therapist who is willing to see me weekly but since I am currently unemployed, the therapist (who is a graduate student in training to receive ABA certification),has agreed to see me for the unexpectedly low fee of $10 per session. To be fair, the therapist in question is pursuing a degree in behavioral psychology. To become board certified, she needs 2,000 hours of clinical experience; so the fee is likely less important to her than accruing the hours that will be needed to qualify for her board certification test.

While I am not a good authority on how to meet people and to develop relationships, I do know that people who have shared experiences are more likely to become friends than people with whom you have nothing in common.

Possible sources of future friends include but are not limited to:

• Church (or some other religious group)
• Volunteer organizations like food banks or pet shelters,
• Social organizations like the Red Hat Society (for women), the Lions Club, or the Shriners
• Athletic groups like softball, volleyball, or tennis
• Hobby groups like fantasy gaming with dungeons and dragons, arts and crafts (painting, making candles, woodwork etc.), or even fantasy football
• Local political organizations that are rallying support for various candidates or policies
• Meetup.com: This site allows you to either look up social groups in your local area or to start your own. Groups in my area have included board gaming, dining out, day trips, baking (limited to women only), and yoga. Although I have given some thought to starting a group for autistic people that meet virtually, I am uncertain as to whether or not I even want this responsibility especially since I already have so many metaphorical oars in the water.

In general, the more people you have in your network, the more likely you’ll find support whenever you have a personal crisis. Sadly, the converse is also true. If you only have a few people in your network, depending upon how many times you come running to them with a personal issue, there could come a time when you have burned them out and they will then be unable or unwilling to hear about whatever is troubling you.

This is yet another reason as to why it’s good to have access to a therapist. A therapist has to listen to you because that’s their job. Friends and family have no such requirement.

Summary

The harsh reality is that autism is a neurological disorder for which there is no known cure. Those of us who are on the spectrum will always be autistic.

Having said this, if you have a clinical diagnosis for level I as I do, the situation is not hopeless. We are, in theory, able to lead independent lives with minimal (if any) support. Since knowledge is power, knowing why you are the way you are should be useful in developing work arounds to deal with this condition.

I also think that it’s important to put things in perspective. I do this by always realizing that things could be worse. Some 20% of people on the autistic spectrum are level IIIs who will need extensive support and care throughout their lives. Many of these individuals are nonverbal and are incapable of living on their own.

In contrast, according to the National Institute of Health, as many as 44% of us have above average intelligence quotients. Many of us (including yours truly) have the ability to hyperfocus for extended periods. When we’re “in the zone”, we are completely focused on the project at hand and can literally spend hours on a given task. When I am in the zone, time ceases to have any meaning for me. I don’t feel hunger or thirst nor warmth or cold. Coming out of this focus is another thing entirely because when I come back into myself, I am often acutely aware of being fatigued, having muscle aches, being overly warm or quite cold, and being hungry, thirsty, and having an acute need to answer the call of nature. All of these issues tend to metaphorically body slam me simultaneously which can be quite disconcerting

One in ten of us have some degree of savant skills. An estimated 2% of us (not including me) have eidetic (photographic) memories.

As the old adage goes, you play the hand that you’re dealt. If you think of your life moving forward as being a blank canvas, how will you fill in this canvas? While none of us chose to be autistic, we have control over the choices we make in life. How you choose to move forward after having learned that you are autistic is entirely upon you.

If any of you have thoughts or constructive suggestions that you’d like to add to this post, please feel free to share your thoughts in the comments below. You are also more than welcome to ask questions. While I can’t promise to know all of the answers, (particularly in the area of interpersonal relationships where my interests and aptitudes are quite limited), I will endeavor to help if I can.