Nope, that’s not a typo. Nope, I don’t have a psychology degree or a counseling license. That probably looks like I’m stepping out of bounds here. Or at the very least, I’ve got b@lls, which sometimes get me in trouble.
A psychologist, counselor, therapist, doctor, or other professional reading this might be smacking his or her forehead and saying, “where does she get off, telling us what to do?”
I’ll answer that. Rudy Simone writes in her book “Aspergirls” that people on the spectrum are true experts on the subject; after all, experience is the best teacher, as they say.
I’m not writing this post for me. I’m writing this to advocate for others out there who may have had (or may currently be having) unproductive or even painful or counterproductive experiences. I’m writing this because, tragically, it’s necessary. Too many Asperger’s/autistic people, especially females, have told or written about truly horrible stories of lost time (spent in the wrong professional’s office), lost years of their lives, lost money (either paid to the wrong counselor or foregone income due to prolonged disability–a failure, for the most part, on the part of the counselor), and most devastatingly, lost hope. Too many of us walk around unhelped, or worse, damaged further. Hopefully, this post helps someone. Better yet, I hope it helps thousands. Or millions.
The following are my pieces of advice for all professionals (counselors, therapists, family, doctors, psychiatrists, neurologists, integrative doctors/professionals, etc etc), in an attempt to help you, the professionals, to help us. Although it may sometimes sound as such, this is not an adversarial rant. Rather, I’m trying to bridge the gap and foster understanding. I’m trying to help you target the real issues and think less about the non-issues. My goal is to help you become more of an expert on this topic. Here goes… (note: this got looooong 🙂 )
First, please–put the diagnostic manual away, and instead, watch and listen. I mean really watch and listen, with open eyes and ears. Listen to us. Try not to filter what you see and hear through the familiar lens of your pathology training and reference texts. Try to forget (or at least question) everything you’ve been told, everything you believe you know. I understand that that information is second nature to you; it’s what you’ve lived and breathed for years, and it’s what your board exams grilled you on. I get that.
But that information is probably not accurate anyway. Please, open your mind to new possibilities. Keep up on the research, but keep in mind that even the scientific community makes its own less-than-100%-accurate assumptions and takes semi-biased viewpoints toward Asperger’s and autism, so take even the research articles with grains of salt.
Please become familiar with what females (and all adults) on the spectrum actually look/act like. Be able to realize us when you see us. It’s not so much that Asperger’s or autism present differently in males than females; Asperger’s is typically pretty similar between the genders. The actual issue is society’s gender-based perceptions. The reality is that males and females are usually judged by their own gender’s yardstick, when in fact they should be measured by the spectrum yardstick.
For example, a male Aspie/autistic and a female Aspie/autistic may actually behave the same way; they may do and say–and even think–identically. But the female on the spectrum will be judged by society’s perceptions of other females (which, of course, are mostly non-autistic), so, for example, her logical characteristics might be seen as “distant”, “cold”, or “tomboyish”. That same trait (logic) is expected in a male, so the rest of society doesn’t think twice; in fact, he may appear low-key and “gentle”.
The best strategy for this is to become extremely familiar with Asperger’s/autism spectrum traits in both adults and children, male and female, so that you can spot it accurately and develop your own yardstick by which to measure us.
Encourage our strengths. Find out what they are, help us find out what they are (sometimes we’re not aware of them), and help us develop them. We’re flowers, maybe lying dormant; help us bloom. Give us the water and TLC that we need. Give us genuine compliments, but only if you actually mean them. Assign us “homework” in this area after each session, for us to work on between our sessions with you.
Try to refrain from passing judgment on us or our outwardly-perceived “behaviors”; if there’s an odd behavior happening, you can bet the ranch that there’s a legitimate reason for it. Please try to resist any temptation to reflexively respond with skepticism or doubt, and take what you see at face value instead. What you may or may not realize is, we’ve spent our entire lives under multiple microscopes–both those of others and those of ourselves–and we’ve consequently been judged and doubted enough already.
Please avoid talking “down” to us. Some of our behaviors may resemble those of the mentally challenged at times, but we’re not children, nor are we cognitively slow. We’re adults, highly intelligent and hyper-aware. We know when someone is trying to psychoanalyze or patronize us. We can smell condescension or superiority; we can sense when we’re being manipulated, and it’s harmful to us. We don’t need a pat on the head and a “there, there, little guy/girl”. We simply need to be treated like the genuine, big-hearted, sensitive, intelligent, and quirky adults (and children, if you also see children on the spectrum in your office) that we are.
Please accept and embrace that we are different, we always will be, and that cannot be stamped out of us, at least not without doing some serious damage in the process. We don’t need our benign differences pathologized. We don’t fit the mould of “normal”, and we never will, and for the most part, that’s perfectly OK. “Vive la difference”, “variety is the spice of life”, and all that. With all the emphasis on diversity and tolerance in our culture, and the accepted fact that there is no one “correct” race, gender, ethnicity, religion, etc, that concept also holds true for the different neurotypes. The world needs neurodiversity, too, and that includes the acceptance and embrace of the neurodivergent.
It’s more helpful to focus less on the outward Asperger’s/autism-specific “behaviors”. I know we act and talk differently. I know we don’t make the best eye contact. I realize that we may break off in mid-sentence to back up and bring you up to speed. I’m aware that when you ask us what seems like a simple question, it may be anything but simple to us, and we may answer with an oral essay…or we may go mute, for various reasons (maybe we’re processing your question or statement, composing a verbal reply, translating our full-spectrum thoughts into the right simple verbiage, or maybe what you said unexpectedly conjured up an emotion that must be dealt with first). I know that we might rock or fidget or fiddle, especially under stress.
I realize that these characteristics might be distracting. It’s easy to focus on those characteristics. But it’s counterproductive and pointless–and probably unnecessary–to do so. At certain times or in certain ways, we must be measured with our own yardstick; the non-spectrum yardstick just won’t do. (Example: evaluating our therapeutic progress by the degree in which we make–or don’t make–eye contact.) To paint with a broad brush, we’re generally OK with our Aspie-ness/autism; it’s the rest of the world we find unnerving. And that’s what we need help with.
Instead of focusing on the outward behaviors, try to focus more on our individual needs, whatever they are. If we’re anxious, help us find practical ways to reduce anxiety. If we’re also depressed, help us in that area. If we’re suffering from short-term memory issues, help us with those. Or maybe we have insomnia, motivation or focus issues, a dysfunctional relationship, a lack of support, or high stress levels at work, etc.; please help us with those specific concerns. We tend to have the same Life Issues that non-spectrum people have; they may just affect us more strongly, or otherwise differently. They may impact us in different ways, or sometimes more severely.
The problem is not the spectrumhood itself, but rather those other “normal” issues I just mentioned; I’ll grant that sometimes our spot on the spectrum might compound some of those issues or make us slightly more prone to them, and our nature may make it a bit harder for us to address and/or resolve some of those issues. We may have specific preferences or needs, ones that the rest of the world may not understand. We may respond to different avenues of therapy or certain therapeutic measures. Helping us may take some extra imagination and outside-the-box thinking on your part, but that’s why we come to you; if we could solve the issues ourselves, we would. 🙂
Help us see people, situations, etc, for who and what they are. Try your best to provide a bridge between the two “cultures”, in which your role is a “translator” of sorts, between the two “languages” and sets of customs. Help us understand why we think the way we think, and how allistics/non-spectrum people think and act, and why they do so. Become a cryptographer that helps us “decode” the allistic neurotype perspective and mannerisms (for example, “when non-spectrum people do/say [X], this is what they mean/it’s because of_____”).
Please volunteer this information so that we don’t have to intuitively try to chase it down or pry it from you. Please be thorough in your explanations and assume nothing, because we may not instinctively know what everyone else knows (and in turn, assume we know). What may be a “given” to everyone else is completely foreign to us.
Be proactive and suggest pragmatic, everyday strategies for dealing with the rest of the world. We need truly-effective game-plans, practical advice we can use, involving actions we can take.
Please be specific in everything you say and every piece of advice you give, as opposed to mentioning ambiguous, abstract concepts before quickly moving on. Describe, preferably in detail, actual real-life, concrete examples of how your advice might manifest and play out in everyday life. Again, you almost can’t get too specific with us; the more literal, grounded, and specific the communication and ideas, the better. We thrive on information we can visualize, and visualizing someone’s words or ideas is also often more challenging for us than it is for non-spectrum clients/patients. Going the extra step to do what may feel like beating a dead horse to you may make all the difference for us.
Be straightforward, realistic, and honest with us; we may have been victims of sarcasm, game-playing, or double-speak in the past. We may have trust issues. You’ll probably have to work a little to gain our trust; it may be hard-fought and slowly earned.
But please don’t beat around the bush or expect us to comprehend a message or idea that is only implied, but never explicitly spoken. It’s frustrating for both sides; you may assume we “got” a certain implied message and may become frustrated when it becomes apparent that we didn’t. We usually get frustrated then, too–usually first at ourselves (for failing to pick up on something), and then at you (when we realize that you meant something you didn’t openly say).
That said, please be gentle; despite our often-stoic (or at least neutral) facial expressions, sometimes monotone voice inflection, apparent lack of emotion, and beneath our seemingly-cool exteriors, we’re actually extremely delicate inside. We’ve often been hurt before, and frequently the damage has been inflicted by the very people who we were supposed to be closest to, the ones to whom we looked and relied on for support, the ones who were supposed to love us the most, the ones we had no choice but to cast into those roles. We’ve withstood years of school-grounds bullying, abandonment by friends, the loss of pets (who are often our only true friends), and lots of self-chastizing. We’ve put up with false accusations, hurtful assumptions, inaccurate perceptions (of us), and at times, denial, neglect, or abuse. We prefer, value, and need the truth, but we’re also generally pretty sensitive, too. We perceive too much, and have spent too many years in too much pain. As the movie “Mercury Rising” said about the autistic child, “it’s not that nothing gets through; it’s that everything gets through.” And we’re defenseless.
Research–and become familiar with–the concept of Neurodiversity; it’s no longer a theory or paradigm–it is becoming realized as fact. The world needs neurodiversity; neurodivergent people think differently than the rest of the population, and we have a lot to offer if our challenges are overcome or successfully adapted to, and our extraordinary abilities realized, developed, and encouraged. If everyone thought the same way, the world would still be stuck back in the Stone Age; cavemen would still be grunting and pointing, and dragging women around by the hair. Please recognize our merit. Variation and diversity is not a disability or pathology; it’s more of a “different ability”.
The greatest benefit you can give us actually occurs between our sessions, when you’re out of your office, interacting with the outside world. You can be a true advocate for us. People will listen to you. You don’t necessarily have to write articles or books or make talk show or radio appearances. But the world can be changed, one person at a time. Examples include:
- If you see an autistic child having a meltdown in a store, don’t judge the child, and don’t judge his or her guardian. If it feels right, reach out and gently offer help.
- If you see a child or adolescent that appears withdrawn or is getting bullied or is being accused by his or her parents of being an underachiever at school, consider that s/he might be on the spectrum. Rather than holding the child back at school and having him/her repeat a grade, consider a less mundane accelerated (previously known as Gifted & Talented) program instead. Speak up to those parents. Stop the bullying, consider different forms of schooling (that don’t involve the low-functioning end of Special Ed).
- If you see an adult with what looks like bipolar disorder, depression, anxiety, OCD, non-military PTSD, or some other such disorder, consider that they may actually be on the spectrum instead, especially if they’ve been diagnosed (or you yourself have considered) several of these diagnoses at once.
- If you come across a derogatory, biased, or inaccurate assertion or comment about Asperger’s/autism or people on the spectrum, please speak up. Please defend us. Please set the record straight. Please help change the way people think.
- Please take a closer look at organizations such as Autism $speaks and what they actually do–and don’t do, or fail to do. These organizations are not the answer. They’re not helping us. They’re failing us. They’re even harming us. None of us actually receive any benefit or support from them. None of us actually support them. They exist only out of the parents’ desire for raising us to be more Convenient…for the parents themselves (the people actually on the spectrum are a distant second). Please don’t “light it up blue” every April. Please don’t “like”/”follow” them on social media. Please don’t donate to them. Please don’t give them any attention. Please support Self-Advocacy Networks instead. 🙂
- When a person on the spectrum appears irritated, consider that they might be overwhelmed or anxious, rather than assuming they’re angry. And it might be due to a whole combination of factors, and not necessarily directed at you.
As I mentioned above, learn everything you can about spectrum conditions; all psychiatrists, general practitioners, psychologists, counselors, and therapists owe that to their patients/clients on the spectrum. That’s only ethical; after all, we’re enlisting your help and the rest of the world is listening to you; you have their ear much more than we do. Everyone will listen to what you have to say. Society respects you as the experts, but the respect has to–and should–be earned.
There are a lot of us out there who truly need your help, but are skeptical and jaded, having been burned in the past by someone who had a diploma and a license, but didn’t have a clue.
If you made it this far, thank you. Thank you for what you do. Thank you for your efforts. Thank you for helping us. And most importantly, thank you for hearing us. ❤