AutChat, an amazing group of autistic people on Twitter, bonded together to create a Safe Space for other Aspergian/autistic and similarly neurodivergent people. (Self-diagnosed/discovered are perfectly welcome, as are similarly neurodivergent people, or people who think they may be on the spectrum but aren’t completely certain.) It’s a very open, caring, and supportive group.
They’re primarily Twitter-based (@autchatmods), but they also have a website and a Facebook page. They host weekly discussions on different topics pertaining to the autism spectrum community and autistic people.
For each discussion, they post a “Question #0” in which each participant is invited to introduce themselves and share/disclose any information they like, followed by four or five questions about the topic at hand.
This past week, the topic was therapy – whether conventional counseling/psychotherapy, occupational therapy, or other autism spectrum-specific therapies (good or bad). And their questions were:
- Have you had therapy as an adult? What kind(s)?
- What kinds of issues were you seeking help with?
- What did you learn from therapy that was useful?
- What could have been done differently or better?
- Any advice for other neurodivergent people who are considering a similar therapy or therapies?
(See how cool they are? I just love this group!)
Participation is completely voluntary and non-committal. You don’t have to get your name on a list or sign up. When you answer the questions via Twitter, you can do so at your own convenience; I usually tweet my answers after the fact. To participate effectively, just remember to add the “#autchat” hashtag after your answer so that anyone combing that hashtag will see it. That’s pretty much it! (Or at least, it seems that way to me; I might be missing something, though!)
I’ve sought therapy before, mostly the conventional psychotherapy kind. My issues were the usual long-standing issues that I’ve had ebbing and flowing throughout most of my life – anxiety, grief, even depression.
I’ve seen multiple counselors, beginning with pediatric therapists around age seven until I was 10, followed by a break, then again at age 14 until age 16, and then at age 34 until age 38.
Finding out that I “have” Asperger’s/autism changed everything for me.
Suddenly I was plunged (eagerly) into a whole different world.
Suddenly I realized that my brain worked differently. I realized that what might work for others may not work so well for me. I had different needs. I needed different understanding. I needed different strategies. The usual “and how do you feel about that?” was not going to work, nor was simply “checking my self-talk”. “Old tapes” were not going to erase themselves as easily, and it wasn’t as simple as “willpower” and “positive affirmations”. I’m not saying that that approach and those strategies don’t help; I’m just saying that I came to realize that I needed more.
I’ve heard a lot–and experienced some–regarding the horror stories (or at least, stories without happy endings) that people on the Asperger’s/autism spectrum have gone through.
On the one hand, those of us who need help, know that we need help.
On the other, wading through directory listings, online or elsewhere, can be a daunting, confusing, and cynical task.
If we’ve had a bad therapy experience before, we might be gritting our teeth and mustering the courage to try again (usually out of necessity, because something in our lives has reached a breaking point), but we fear the prospect of getting tangled up with another Bad Apple therapist. Or perhaps the therapist wasn’t horrible, per se, but lacked insight or perspective, or maybe they failed to connect with us, or maybe their advice wasn’t tangible enough to be useful. Maybe they spoke in vague concepts, where we needed a practical step-by-step to-do-list.
So when I came across that last question: “Any advice for other neurodivergent people who are considering a similar therapy or therapies?”, I suddenly had a lot to say. How I answered that question piqued the interest of several other Twitter-mates, including someone who asked if I had this information written somewhere. I didn’t (yet), but that person (bowing in gratitude to them) inspired me to write it.
The wheels began to turn, gearing up to answer the question: “how do I, as a person on the Asperger’s/autism spectrum, find a suitable therapist?”
This particular “lot to say” that I refer to is strictly my own opinion, written from my own perspective, in my own situation, considering my own needs. But even though I can only speak for myself, I frequently find that I’m not alone, so I’ll share my thoughts about how to find a good therapist, with the goal and hope of helping others.
Tip #1 – To ease stress, email, or have someone else you trust do the calling for you. I know that this doesn’t have anything to do with the therapist themselves; it mostly involves helping ourselves get out of our own way. Because sometimes, just being faced with the idea of having to make all those phone calls can present a pretty lofty hurdle. Having someone close to us do the legwork might take some of the pressure off and diffuse the anxiety, like releasing a pressure valve.
Tip #2 – When researching various directory listings online, when you come across a therapist who catches your eye, check out their website, if they have one, and read through it as thoroughly as you can. That’ll give you a feel for what they’re all about, their philosophy (which is important), and it might give you some clues about the strategies they use and the schools of thought to which they subscribe. It’s important to find someone who says things that resonate with you.
Tip #3 – When you make (or someone close to you makes) the phone call to the therapist’s office, have at least a few questions prepared, especially if their website didn’t address them. These questions can be whatever you want them to be, whatever is important to you. The rest of the tips, except for the last one, focus on questions that I would consider asking–information that I would want to know before proceeding with them.
Tip #4 – It might be best if they have experience with adults on the spectrum. I say “might be”, because one of my best counselors ever was one of my first. Because he worked mostly with adults and possibly teenagers, my parents began to see him first; I didn’t see him until I was 14. But my parents got a lot of mileage from their sessions with him, and then when I joined in, so did I. He was neurotypical, and it would be 25 years before the possibility that I might be on the spectrum would even be conceived, but his insight was spot-on, his perspective was refreshing, his mind was open, and his strategies were practical.
That being said, he’s a rare gem, and he’s retired now. So, armed with my newfound Asperger’s discovery, and feeling my mask and my coping strategies for dealing with the world beginning to slide, it has become more important to me that any counselor I work with from here on have plenty of experience with adults–not just children–on the Asperger’s/autism spectrum.
Counselors/therapists with experience in this area are fewer and further between, and they may be tough to come by. After all, the recognition that we exist is a relatively new (or at least, freshly rediscovered) phenomenon. But I have the feeling it might be worth the effort; after all, we’re wired differently (!). We sense and perceive the world differently, we have different challenges and struggles (as opposed to neurotypical people), we have different emotional expression, we think (and sometimes talk) differently, and we “present” differently when we have problems (i.e., depression might look outwardly different in a person on the Asperger’s/autism spectrum than it might look in a neurotypical person).
Tip #5 – It’s crucial that the counselor/therapist looks at Asperger’s/autism as a difference, not necessarily a pathology. If they look at it as a pathology, they’re more likely to bow down to the medical model and try to “fix” us, usually by suppressing our true selves further, and measuring our progress by neurotypical standards.
I had been seeing a counselor periodically, and I had a few sessions with him after my self-discovery that I was more than likely on the spectrum. After my “before” and “after” spectrum discovery lines had been drawn in the sand, he began to nod approvingly and praise me for “making better eye contact today”. Although he’s a nice guy, a great listener, and very compassionate, I found his neurotypical yardstick unsettling and unproductive.
I think that finding someone with a more progressive view of the autism spectrum and the people on it, would serve us much better. They’re more likely to work with our characteristics, rather than try to snuff them out. They’re more likely to recognize the strengths, benefits, and positive attributes of our Asperger’s/autism-ness, and accept us for who we are, utilizing what we already have in place, to help us.
Tip #6 – It’s also important to find a professional who recognizes and respects our challenges and disabilities. We all know that while being Aspergian/autistic can be interesting, amusing, advantageous, or even fun at times, it’s also not rainbows and picnics all the time. We have our difficulties, challenges, and disabilities, too. The last thing we need is to be minimized and marginalized by the very people we’re relying on (and often, paying plenty) to help us. We don’t need to be belittled, dismissed, written off, or downplayed. Just as we need our strengths recognized, we need our difficulties to be taken seriously as well.
Tip #7 – I personally prefer a therapist/counselor who stays current on new information. The scientific community is hard at work, spitting out research papers and new tidbits of information all the time, adding to the collective info-cloud constantly. We now know that vaccines don’t cause autism, nor do “refrigerator mothers”, thanks to the scientific community. Rather than being thrown away as “feeble-minded”, “mentally ill”, or “violent”, we know that Asperger’s/autism is a neurodevelopmental condition, as opposed to a mental illness.
But it doesn’t stop with research papers…
Tip #8 – I also think it’s very encouraging (and for me, relatively necessary) that they are also familiar with–and have actually read–books by Temple Grandin, Steve Silberman, and other cutting-edge books written from a progressive Autism Acceptance angle. Dr. Grandin herself says that “the world needs all kinds” and has some encouraging things to say about the Asperger’s/autism spectrum. Steve Silberman delves deeply into the history and development of the autism diagnosis and (I’m about 2/3 of the way through the book) has hinted at the concept of neurodiversity.
I think that if a counselor isn’t familiar with at least these two authors (or others similar to them, like Rudy Simone and/or Tania Marshall), then they’re probably clueless. That lack of awareness would be a red flag for me to keep looking.
Tip #9 – Ideal but not required (for me) is that they have an extensive intake questionnaire, or detailed initial consultation. The more they ask, the more I can share, and the more I can share, the more information they have at their fingertips to help me.
Tip #10 – Crucial for many of us (especially in the US) is that they respect any preference you might have for remaining outside of the computer system. In order to do this, insurance coverage can’t be used; you’ll need to pay privately and not get insurance involved at all (in fact, don’t even notify your insurance company, or they will almost assuredly make note of it in their database). I realize that this doesn’t apply to everybody; different regions/nations have different healthcare systems and financial situations. Some people have the option–and financial means–to seek private practitioners, while others don’t. I’m disadvantaged in that I live in the US where there is no national healthcare system to help with costs, but I’m privileged in that I’m able to remain outside the system and “off the books” (for the most part). Covering costs myself, for me, is a little iffier; sometimes I have the funds, but many times I don’t.
It’s also true that privacy laws in this country are rather strict. But they do get a little interesting in regards to mental health, which counseling/therapy is considered. Some of the privacy regulations are stricter, while some can become effectively looser (and may become even more so if the federal Congress decides to proceed with the legislation I wrote about this last fall, which has been effectively tabled/stalled for now; although my post was written regarding diagnosis, the legislation actually pertains to any mental health records, including ongoing counseling post-diagnosis).
But anyway, the best therapists on my list are extremely understanding and more than happy to respect and accommodate my preference to remain anonymous. The main point here is their reaction to my request; the best personality fit (for me) is one who doesn’t bat an eye. This means they’ve heard the request before (meaning they actually do have experience), they think independently (without merely following the masses), and they don’t judge or second-guess you (meaning you’re less likely to experience gaslighting).
Tip #11 – I might tend to prefer someone a bit younger, without the “there, there, you’re just another over sensitive female” attitude that prevails in the conventional medical establishment.
Age obviously isn’t everything, of course. Even Hans Asperger himself, from what I’ve been reading, loved his “little professors” and there were several facilities that have popped up (and unfortunately, down) through the decades that have actually been quite progressive. Seeing a counselor of this mindset and from this time period, if it were possible, would be awesome.
But many of the older counselors (anyone above, say, age 50-ish?) might be more likely to be older-fashioned; after all, they were likely schooled at a time when autism and schizophrenia were joined at the diagnostic hip and blamed on the person’s mother.
So, if the therapist I’m considering is indeed older, I might (fairly or not) hold them to a little extra scrutiny; they will need to be extra-progressive in their approach.
Tip #12 – I also tend to gravitate toward those who think independently. Someone who doesn’t just go by what the authorities establish, without question – because that mindset can be dangerous (just Google “just following orders” and you’ll see what I mean, if you don’t already know; I might come across as a little paranoid, but consider what has been–and is still being–done to people on the Asperger’s/autism spectrum in the name of “therapy”!).
Conspiracy-esque theories aside, it simply makes more logical sense (to me) to be seen by someone who thinks outside the box–or perhaps, as one blog-writer (link to their blog) so eloquently puts it, thinks in a different box altogether. After all, we’re not wired in the same way as the average bear. Having someone on your side with a little imagination and ingenuity can be a definite plus.
Tip #13 – Whatever you do, don’t settle for someone who doesn’t resonate with you or isn’t helping you effectively. Of course, when starting with a new therapist, the first (three, four, five?) sessions will be mostly you talking (prompted or not by questions from them), as they gather information and background from you. After all, you’re meeting each other for the first time and they’re familiarizing themselves with your backstory, your current situation, and even You yourself. So if it seems like all they do is nod and write for the first few sessions, that’s OK. After the information-gathering is mostly complete, however, it’s time for the rubber to meet the road.
When looking for a therapist, be choosy. When deciding whether to continue, be even choosier. In my opinion (others may differ) look for these red flags:
A) Ending a session prematurely – During a session, you might dive deep into a painful memory; the therapist should never look up at the clock, realize the time is up, and say, “well, I hate to leave you like this, but it’s Time.” They should either extend the session (asking you first), or, be cognizant enough to decide whether or not the subject should even be brought up, given the amount of session time remaining.
B) Attempting to minimize your situation – I once talked to someone who had been in a serious car wreck, with permanent injuries, and the counselor showed them a medication he was taking and said, “well, I have to take these for the rest of my life.” Life is not a contest, not to mention a therapeutic session. A counselor should never try to marginalize you or one-up you.
C) More than one session in which you walk out feeling worse than you walked in – Sure, it’s possible–and common!–to feel shaken up or unsteady/unstable/vulnerable after a “meaty” session in which you’ve done some heavy work or made a painful realization or made a significant breakthrough (especially one that was very emotional). Or maybe you feel a need to cocoon or hibernate, away from people for a while, while you ponder the session and regain your mental/emotional footing. That’s perfectly OK.
The kind of “feeling worse” I’m referring to is the type that is underscored by a coexisting feeling of uselessness or un/counter-productivity. The kind where you shrug and say, “well that was a waste of my time.” That’s what you don’t want. That’s when it’s time to give it one more session, during which you raise these concerns with the therapist and give them a chance to give a sound explanation or kick their butt in gear, and if they fail to do either of those, then give yourself permission to cease.
Again, these are just my opinions, based on my experience, and given my own situation and preferences. Others may have something different to say, or something else to add, and I encourage them to do so in the comments if they like!