First Steps - Understanding and Accommodating

Please note: this post refers specifically to late diagnosed autistics, though many of the experiences, emotions, and next steps can be similar for other diagnoses and situations.

Buckle up friends, this post is a long one! I am diving into dealing with an adult neurodivergent identity, looking at some important considerations when seeking a medical diagnosis, and using some simple metaphors to start examining and talking about your own experiences.

Welcome Aboard!

After hours, days, or weeks of ruminating, now you are taking your first steps on your journey towards understanding your own brain. Maybe you’ve gotten onto AutisticTok and feel like the content is a little *too* relatable. Maybe your child has just gone through testing and a lot of the questions hit close to home. Maybe a doctor or therapist you’re working with has suggested that autism may be a factor in your struggles. However you’ve arrived at this point, you’ve realized that you struggles are different than most people’s, and that something’s gotta give.

So where do you go from here? Do you run out and find a doctor or psychiatrist to get an official diagnosis on your record, do you interview your friends and family to confirm that yes, you are noticeably weird, do you quit your job and go meditate on a mountain to escape the demands that suddenly seem more overwhelming than ever?

Breathe!

Firstly, stop and take a breath. You are the same person with the same values that you were before you started down this path, and you’ve survived this long without even having all of the pertinent information about how your brain works! There are a lot of emotions that come along with discovering new facets of yourself and they are all valid. Take some time, actually set aside some space and hours, and just sit and let yourself feel. Overwhelmed, excited, confused, scared - it’s all normal!

Taking Action?

The next step is to figure out what you want to do with your new thoughts and questions. Many people immediately jump to asking about an official diagnosis - do I need to go to a psychiatrist or go get testing? Honestly, if you are an adolescent or young adult, my advice is generally to NOT pursue this. A diagnosis can be helpful for accessing accommodations and supports, especially in grade school, but can turn out to be a liability once you are an adult.

If you are not familiar at all with disability politics in this country, strap in for a wild and rage-inducing ride. Hint: they’re not great.

Disability and Agency

Autism is considered to be a disability by many sectors, including education, employment, and military. Having an official diagnosis can prevent you from enlisting, from receiving certain levels of security clearance, from adopting or fostering, or even from making decisions about your own medical care. Autism diagnoses have been used to deny people access to healthcare and medical interventions, and autism has played a role in more than one person losing custody of their children if they are in a contentious divorce.

In other words: having an identified disability in this country can be a sometimes-dangerous liability in a number of situations. Unless you need a diagnosis in order to access a specific intervention or accommodation, it could do more harm than good - and even if you do need that access, there are almost always alternative ways of getting there.

OK, Then How Do I Know?

In my experience and that of my friends, the online screenings such as the CAT-Q, the RAADS-R, and the AQ are fairly accurate even when self-administered. When I got my diagnosis from a local therapist and adult autism specialist, they had me fill out those same questionnaires and paired that with a social history to get the official picture. There is also a new Monotropism Questionnaire recently published by autistic researchers that looks specifically at the monotropism (hyperfocus/hyperfixation) aspect of neurodivergence!

if those online posts are really hitting home and seeming relevant, self-identification is completely valid and is widely accepted in the autistic community. Official diagnoses can carry consequences, and getting access to them in the first place is often prohibitively expensive or denied based on outdated stereotypes.

If you feel like you *really* need to know - find a good friend, coworker, or other autistic person in your life and ask them what they think! “Peer review” is very real and fairly accurate, and can be really validating for someone who is questioning their experiences. Listen to others’ lived experiences and see if they resonate.

Great, Now What?

So if you do some more research and follow up and decide that yes, this label does seem to fit you, or if you do pursue an official diagnosis, what then? A new adult autism diagnosis seems like a monumental piece of information to suddenly have to integrate into your life, and what would that even look like?

Looking Back

A big part of moving forward is, paradoxically, going to be revisiting and re-processing so much of your life up until this point. You’ll think back on things from your childhood that never really made sense, on those little differences that everyone else seemed to notice but you didn’t quite understand, on the social outings you weren’t invited to, the conversations that just kept going off the rails even though you tried your best to communicate.

You suddenly have a new lens and a new context for everything you’ve done and experienced, and it takes months or years of processing through that to really understand and re-contextualize things you’ve always just assumed about yourself. Anger and grief are really common to feel - but many people also feel overwhelmingly relieved that there is a name for what they experience. They are not alone, and they are not broken. YOU are not broken.

Looking Forward

If you have experienced burnout and overwhelm up to this point, as most of us have, you will want to start looking at making things better. You’ve got this new knowledge, this new lens through which so much makes sense - how can you use that so that things won’t be so hard? And how can you possibly explain all of this to your loved ones, your colleagues and friends, your kids?

Being able to conceptualize and explain your own needs is a huge part of making your life easier and more accommodating. How can you fix problems if you aren’t even sure what they are? This is where both credentialed professionals’ expertise and autistic adults’ lived experiences can really come in clutch.

Figuring Yourself Out

The intersection of medical and therapeutic knowledge (therapists, physicians, occupational and speech therapists) with the lived expertise of neurodivergent adults has so much potential to create positive change. I encourage everyone to explore all of the resources at their disposal, particularly the following:

-Occupational therapy. So many “panic attacks” and “depressive episodes” can in reality stem from sensory overload or shutdown in the autistic person. But if you don’t know that most people *don’t* feel pain from wearing socks, or get dizzy when they go up stairs, then you don’t know that you can address it!

An occupational therapy evaluation can help identify sensory needs and sensitivities, which may affect your focus, pain levels, and emotional regulation. They can also look at things like balance, fatigue, and making sure your body works all together the way it’s supposed to. And importantly, many OT’s can look at your executive functioning - the reasons why you can’t “just do the thing” or stay organized no matter how hard you try!

-Medical Check-Up. (Disclaimer: I am not your doctor and this is not medical advice. Please discuss your medical care with YOUR doctor.)

The exact causes are not yet known, but there is a great deal of evidence of autism comorbidity (overlap) with connective tissue disorders and the way the body processes certain vitamins. Get your vitamin levels checked and talk to your doctor about a general physical with extra attention paid to checking hypermobility, unnoticed tongue tie, b12 levels, cortisol, and anemia.

-Lived experience of autistic, ADHD, developmentally and physically disabled, and otherwise marginalized adults. The disability community has been doing the heavy lifting of advocating for accommodations for DECADES, and has knowledge and expertise that will help you. Listen to the established advocates, their successes and their barriers, and try to see how their experiences may intersect with yours.

Listening to the journeys of others and reading about the ways and the avenues through which people advocate, can open your eyes to things you didn’t even know you could address. Your child can get support and accommodations at school, and if you work, you are also entitled to certain supports. Would being allowed to wear noise-canceling headphones make being in the office more bearable? Does being allowed to wear sunglasses in the store make your migraine go away while you’re at work?

Learn the Language

When you start interacting with the Actually Autistic (it’s a hashtag, check it out on various social media) community, there is going to be a lot of discussion that you’ll feel is over your head. People have opinions on ABA, PCIT, AAC, PDA. Knowing what the heck people are talking about will make you feel a lot less lost - check out something like “The Neurodivergent Encyclopedia on My Soul Balm’s Blog” (you can Google it) to familiarize yourself with the endless abbreviations!

Apart from knowing the jargon, when you are listening to the experts or talking to others with lived experience it’s important to hear how they are describing experiences or feelings. Having the language to describe your own experiences is so empowering in letting you identify your quirks and explain them to others.

Some Basics and Metaphors

A lot of the common experiences that people will talk about are meltdowns, shutdowns, sensory overload, overstimulation, stimming, recharging, needing time and space to buffer, difficulty processing speech and speaking verbally, having a short fuse with your kids. All of these are normal parts of the ND (neurodivergent), specifically autistic, experience. So how do you know what’s what? And how do you explain it to the people around you, and why do you even need to??

“Get Up and Go” and “Don’t Explode”

The two basics I always orient people to are social/verbal/executive functioning energy (gas, or battery life, or bandwidth) and distress tolerance/overload (pressure gauge, boiling pot, volcano, overflowing cup). When talking to older adults I tend to use “gas tank” and “pressure gauge”. With Gen Z and younger, I find that “battery life” and the overflowing cup metaphor make a lot more sense.

Regardless, the important concepts are: 1) that your functioning, your motivation to do things, your ability to see things through, and your self-control is like a battery - finite, drainable, and can be recharged to a point.

2) Your ability to tolerate change, control your emotions, and ignore irritants is also finite, like the volume of a cup, and pressures in those areas accumulate like drops of rain over time. Put too much in that cup and it WILL overflow. Whether that looks like tears or screaming is entirely dependent on the person and the circumstance.

How Does That Help?

OK, so understanding that you’ve got a tank of gas and a pressure gauge gives you a metaphor to explain how life affects you. Say you’ve got a half tank of gas for the day and have to go to the grocery store after work. Do you have enough gas in your tank to go shopping, AND cook dinner when you get home, AND clean up afterwards? Or will that leave you running on fumes?

With your pressure gauge, maybe going to the office where it’s too cold all day sets things simmering. Too much small talk during the day sets things bubbling. Traffic on the way home gets things boiling. You’d like to take a break to let off some steam when you get home, but the kids jump right on you. Suddenly the pressure boils over and you snap at them. Can you identify that the kids aren’t what really set the explosion off, can you start seeing the things that get that pressure rising?

OK, Let’s Work On It

If you want to keep up with life’s expectations without completely burning yourself out and beating yourself up, you need to start looking at what drains your battery and what causes your pot to boil over. Then it’s time to start prioritizing things that can recharge you and keep things from feeling too much like pressure.

If this sounds like something you’d like to explore, please check out my Services page to learn more about how personalized education about neurodivergence, the sensory systems, executive functioning, and effective communication can benefit you. And as always, thanks for following along on my quest to educate my little corner of the internet on affirming and validating the ND experience!