Therapy for People on the Spectrum

[sisselcakes]

I've had two very bad experiences and gave up, most people don't realise how much harm a bad or unsuitable therapist can do.

I've learned to help myself, there was no other option for me and I occasionally had a helping hand from friends and lovers. So it goes.

Yeah, over the time I've been participating on this site, I've come across various references to bad experiences with therapists. I think therapists don't realize you have to have a great amount of knowledge and work with people on the spectrum. If they are aware someone is on the spectrum, they should make a referral to an expert if someone isn't one. Many of them won't even pick up on someone who is undiagnosed.

One of my strengths is diagnosing behavioral health -related conditions. Though I'm not a psychologist (so I can't actually diagnose), I remember meeting a man (and this was before I had much experience with people on the spectrum - primarily my ex) who came into clinic with anxiety. Maybe most therapists would have just considered him as a bit awkward, but as we talked more, I strongly suspected he was on the spectrum. I explained to him the traits and he was so grateful because he had always been different and trouble socially, but had no idea about Aspergers. I explained how he could seek a diagnosis if he wanted to go that route.

Thanks for your input!

 

[sisselcakes]

I would definitely prefer any therapist I work with to be qualified in an area of specialism they propose to offer. Normally I would not think it's enough to say one has educated oneself and dated someone who is typical of the intended client group. A neurosurgeon can't get the job on the basis of private study and dating someone who was having brain surgery. Hopefully.

Yes, I get your point, but doing therapy "isn't rocket science" as one of my old clinical supervisors said. I think it's more about who the person is their inherent ability to related to others, rather than having specific techniques. But I'm not saying that a person shouldn't be knowledgeable.

Psychotherapy would be very different from doing something like ABA or OT which rely on technique and specific skills. I should have mentioned, by the way, that I was talking about helping with life adjustments, relationships, and symptoms of depression and anxiety - those kind of things, not looking to do behavioral modification. That definitely requires formal training.

 

[sisselcakes]

SO many on here have had terrible experiences.

I think some things that made me feel safer were:

1. When I went in if the therapist right off the bat asked how the lights were and the temp. And if moved or wore sunglasses did not blink at all.

2. Allowed me to stand up for the session. Didn't write it in the chart! One did----client stood for whole session AS IF THAT WAS WEIRD. IT WAS NOT WEIRD FOR ME! FIRED!

3. Quit talking about their problems and how much they know or want to learn about autism.

4. Ask about my special interest. OH YEAH. If you want me to talk in full and coherent sentences, ask about my special interest.

5. TREAT SOME PRO BONO. Even when I had Gold plated insurance, I never went to a therapist who did not have sliding scale and pro bono. I did not want to feel like I was in some privileged place when so many autistic people are homeless and in jail and with abusers because therapists can be so greedy.

Funny thing about autistic people. No one gets us but we get one another, like bees in a hive. So it hurts when so many are left to rot

So here is how I interpret what you wrote, which is great feedback btw!

1. When I went in if the therapist right off the bat asked how the lights were and the temp. And if moved or wore sunglasses did not blink at all. The therapist accepted you as you are and didn't act like you were "weird".

2. Allowed me to stand up for the session. Didn't write it in the chart! One did----client stood for whole session AS IF THAT WAS WEIRD. IT WAS NOT WEIRD FOR ME! FIRED! The therapist understood you needed to be comfortable in your own way (just like any person would).

3. Quit talking about their problems and how much they know or want to learn about autism. Didn't focus on their own needs or interests. Actually listened to you.

4. Ask about my special interest. OH YEAH. If you want me to talk in full and coherent sentences, ask about my special interest. By talking about your self interest, they were showing interest in what you care about and you are passionate about talking about something love, so it's easy for you to talk about that passion.

5. TREAT SOME PRO BONO. Even when I had Gold plated insurance, I never went to a therapist who did not have sliding scale and pro bono. I did not want to feel like I was in some privileged place when so many autistic people are homeless and in jail and with abusers because therapists can be so greedy. You looked for someone who really cared about people, not just in it for the money.

These are great insights for me. The things above would be important for NT's too, actually!

 

[sisselcakes]

I hope nobody here is offended by my repeating this once again. I had seen at least a dozen psychiatrists, psychologists, therapists and counselors, and not one recognized autism as the core problem, or even present. It was discovered by a job search counselor who set up an evaluation. Since I was diagnosed, I did get some therapy. A typical visit consisted of:
"How is your depression?" "Under control."
"How is your ADHD?" "Not a big problem."
"Fine. Here is a renewal prescription for you ADHD and depression meds. See you in two weeks."
Nothing about autism, and no support for it. You may think you detect a bit of bitterness in some of my comments. Yes, there is bitterness over a wasted life because nobody cared that I was having problems.

Thanks for your response. I have a question for you. If the therapist was wanting to better understand how you are functioning/coping as a result of the anxiety or depression, what would be a better way to ask?

I know that "how" questions are challenging for a lot of people with ASD. I'm guessing that closed ended questions would be better, like "how many hours do you sleep a night?" Something along those lines?

You know what? I went through a bitter period myself. Not because I'm on the spectrum (I'm NT), but because I've suffered from treatment-resistant depression since 20 years old. I'm 51 now. I had a moment pretty recently when I looked back on my life and realized how much it has kept me from accomplishing, including the inability to find "the one" (I don't really believe it "the one", just a saying). So, I get feeling bitter. I'm especially susceptible when I'm feeling low.

 

[Shamar]

Thanks for your response. I have a question for you. If the therapist was wanting to better understand how you are functioning/coping as a result of the anxiety or depression, what would be a better way to ask?

I know that "how" questions are challenging for a lot of people with ASD. I'm guessing that closed ended questions would be better, like "how many hours do you sleep a night?" Something along those lines?

You know what? I went through a bitter period myself. Not because I'm on the spectrum (I'm NT), but because I've suffered from treatment-resistant depression since 20 years old. I'm 51 now. I had a moment pretty recently when I looked back on my life and realized how much it has kept me from accomplishing, including the inability to find "the one" (I don't really believe it "the one", just a saying). So, I get feeling bitter. I'm especially susceptible when I'm feeling low.

The questions were formal, perfunctory, and without interest in an answer. I was going there specifically to learn about autism (newly diagnosed, remember?) and get treatment. The problem is, THERE WAS NO TREATMENT!!!! The sessions lasted a grand total of two minutes. Nothing about autism. No attempt to draw me out or find out what was really going on. I am certain she knew nothing about autism, and I question if she was even qualified to be a therapist (despite having the authority to write prescriptions). I was nothing more than a box to be checked off on a sheet of paper so they could get paid by the state for "treating" me.

 

[Thinx]

Yes, I get your point, but doing therapy "isn't rocket science" as one of my old clinical supervisors said. I think it's more about who the person is their inherent ability to related to others, rather than having specific techniques. But I'm not saying that a person shouldn't be knowledgeable.

Psychotherapy would be very different from doing something like ABA or OT which rely on technique and specific skills. I should have mentioned, by the way, that I was talking about helping with life adjustments, relationships, and symptoms of depression and anxiety - those kind of things, not looking to do behavioral modification. That definitely requires formal training.

I think there's a lack of professional standards, which shows really clearly when individuals try to justify offering therapy without specific qualifications with vague comments like, it's not rocket science. Offering specialist therapy does require study and qualifications related to the client group and areas to be helped with, I think.

Helping effectively with all the things you mention would require this, despite the fuzzy n' vague individuals who say things like, 'It's not rocket science '. This person was setting a poor standard by such comments.

 

[Els]

Your feedback is intriguing to me and helpful. Hope you don't mind me digging in a little more.

RE: "how weird people are, let's analyze all this weirdness and the awkward comments and this weird thinking and those strange propositions". Did you mean that they were thinking that of you or that you walked away thinking they were weird?

RE: "All you can do is guide, give explanations where the person struggles, and give more knowledge about how YOU function. But there's no healing or relieving anything as far as I'm concerned." I should have made it clear that I wasn't talking about healing symptoms/traits of ASD. I meant counseling someone to help with mental health-related anxiety, depression, relationship, and life adjustments. So, I guess that would be supportive in nature- basically what you said about giving guidance. I would want to help someone find their own solutions because only that person really understands how they function.

"Also from the stupid advices and comments I have heard, I've been adviced to "accept the moment". " literally made me laugh outload. I'd be annoyed if someone told me that too! That's kind of basic CBT oriented therapy.

RE: "a therapist having no clue but believing he/she had an understanding (lol) and proposing stuffs that just can't work because it can't be changed." I would never assume I understand someone's experience. I could only try to understand.

Thanks for your response. Good material!

- I walked away thinking they were weird and I needed to analyze them more to understand what they were saying and thinking because it was alien to me...
For example, I was explaining that I needed to analyze social interactions in movies, and the woman told me "it's a waste of time, real life isn't a movie, when you'll understand that you'll change your strategy". Well, thanks, I'm not stupid I know it's a movie not real life, but I was at a point where my understanding of the social world was really low and I NEEDED to analyze movies. I'm definitely SURE it helped me, if I had to go back in time, I would start studying that even sooner. So, after leaving, I needed to analyze what she wanted to say with her comment. I didn't get it at all. That didn't make sense to me, I still have no idea what she meant and what she thought. That's a classic autistic situation I think, especially when younger. I know a movie isn't real life, it would've been much easier if it was as stereotyped, I know it isn't (?). I'm not stupid (?). I went out thinking about those kind of commentaries : "how weird was this conversation! let's analyze what she meant when she said X, X and X". It made my life more difficult completely uselessly, just as always "okay, those were more taboo subjects to avoid, let's add that to my list of untolerable things to hear for others". So even to the therapist, I had to present a modificated and corrected version of myself after having analyzed what's weird in her (to me it's her being weird, to her it's me being weird). That just doesn't work. We can't communicate. Honestly, the probability to ever understand my issues is down to minus 30. After leaving those type of interactions, I just had more work in analyzing of how NT people and the world are weird and alien to me, therapist or not. I could've sat and talk about this to a friend at a cafe, I would've received the same type of useless commentaries and left with the same discomfort and interrogations about how NT people function and trying to understand what other people don't want to be talked about.
There's no understanding or it would recquiere me to explain a lot to the other one about basic things for me. Normal stuffs. I realized recently that if there had been so many misunderstandings it was because the others couldn't imagine. I thought they did imagine but overcame it themselves. Turned out, they never had to "overcome" anything. I thought they did have a key I couldn't find, that's why I was analyzing that much. I analyze less now that I understand they don't have any key, it just was always easy for them. How weird, I can't get it.
Also, I think it's really different to see someone who's been diagnosed early and someone who hasn't. They won't have the same life experience and might relate to you in different ways just because of what they've learned. Most likely, someone undiagnosed for long will hide a lot of his/her issues to you because that's how they learned to relate to others, the need to censor and camouflage. Some things are dangerous being told, people don't accept them. Just as the therapist for my copying mechanism of analyzing movies. I never talked about it again after this try to open myself, and you can be sure I most likely never will talk about that in real life, ever. Now the therapist teached me it's really a taboo ! An other conversation unspoken rule. Do not talk about analyzing movies. Lol.

- I get your point now, I was unsure about what was "therapy" meaning precisely. Be aware that when talking to a person with ASD you'd have to be extremely precise in vocabulary because - at least to me - one thing doesn't mean an other. If you say a word, I understand this word. If you say a sentence, I understand this exact sentence. I don't understand easily something others mean. A psychiatrist asked me "was THERE anxiety during covid19?", I couldn't understand what he meant. Where there? In the household? In my country? What does that mean? He meant for me. I don't get that. I got "there". Not "me". That's one of the things that make communication in general difficult with people. They need to be interpreted in ways I ignore, and I need to be interpreted in ways they ignore. Moreover, everyone has different personalities, ASD or not, which can make things tricky to figure out. ASD isn't my personality. Many people think I'm unsure of myself and introverted or snob. I'm none of that. I'm very sure of what I'm saying, but I have lags and difficulties verbalizing. I'm not introverted, I'm an extrovert. I'm not snob, I feel uncomfortable because I don't know what's expected of me in this situation. Tricky to understand. An other person with ASD will have a different personality than mine and different manifestations of it. They might have different sensory issues and different levels of tolerance. They might speak well or they might struggle or not speak at all. They're different.

- Yes I think it's the classic CBT approach indeed, I don't believe it can work on me. Maybe on ponctual issues, but for now I'm not convinced about it. I'd need new informations about it to reconsider.

 

[SDRSpark]

I have not been officially diagnosed, and I haven't had much in the way of therapy that was any good, so that's the perspective I'm speaking from. This is what would be important to me (actually I wish I could find a therapist like this, but after so many failures I'm disinclined to keep trying, and my work schedule adds a level of difficulty as well.)

I would need a therapist who listens to me (don't we all) and what my concerns actually are - I'm not saying don't challenge me, because I'm not always right, but I need someone who won't push their own ideas on what's important on to me. (For example, I'm asexual, and a therapist who decided that asexuality is something that needs to be fixed and insisted on focusing on that would quickly lose me as a client. I had a psychiatrist one time grill me about why I would lose sleep literally one or two nights a month - hardly indicative of a problem - and it was a question I couldn't answer because there wasn't a consistent reason. Sometimes it's because there was something on my mind, but sometimes it was because menstrual cramps kept me awake, or I had some illness. There literally wasn't an answer, and I told her that, but she wouldn't accept my answer and kept grilling me for an answer that didn't exist.)

My biggest struggles (caused largely by ASD but also past trauma) involve not being able to tell when someone is screwing with me - I have difficulty setting boundaries (more accurately, realizing that there needs to BE a boundary...I'll bend over backwards to help people and get taken advantage of a lot if I'm not careful) and I tend to take people at face value for way too long. I'm generally the last one to know if I'm getting hurt. I also tend to mimic the people around me, unconsciously, in an attempt to fit in, and this has lead me to behave in ways that I really am not OK with in hindsight. Help navigating social situations would be incredibly valuable to me (and from what I've read here and in other places, many people with ASD need help in this area.)

Ability to recognize that the client might not actually know why they feel the way they do or know what's relevant or not - this is actually more of a diagnostic thing, but it's tripped me up almost every time - there are things I definitely didn't think to tell the doctor or therapist because I didn't realize it was important. I actually didn't realize how much things like sensory issues affected me - in fact I went for help with "anxiety attacks" which turned out to be sensory meltdowns and I just didn't know - I thought I was having anxiety or panic attacks and couldn't figure out why they didn't look like what everyone else described as anxiety/panic attacks. If the therapist or psychologist had asked me to describe one of my attacks and what was going on around me when it happened, etc. the fact that it was in fact a sensory issue would have been clear almost immediately and I probably would have an official autism diagnosis today. (This is more a thing for those of us who are adults and not officially diagnosed or are newly diagnosed I think, but I could be wrong about that!)

 

[Els]

Also something that might be helpful for you if you work with asd people, make sure they interpret themselves correctly, especially if they have alexithymia.
An example of what I mean :
I need to go in the living room to paint (not draw, but paint), and I was feeling uncomfortable about it. My first interpretation of myself : "oh, that's surely because I'm anxious other people will look!". More than half an hour later, after a deep self conversation, I realized I completely misunderstood myself. I didn't want to go there because I dislike being interrupted if I'm focusing on something, and it's also noisy. Pushing myself to do that did create anxiety, but anxiety wasn't why I didn't want to do that. It's just a preference I have.
A person with alexithymia might not interpret well his/herself. If you start addressing this issue on an anxiety perspective, it won't be solved because it's just something that's irritating me to be interrupted and to work inside noise. If you address that by trying to change the environment and come up with real solutions, that might change my life. But I don't even interpret myself well, so that's even more complicated... I never noticed that I didn't like doing some things just because of not liking them, and that forcing myself to stay in this situation and pushing me WAS creating anxiety; not a classic case of "anxiety makes you avoid it". But because of alexithymia I might not understand what comes from what, it's confusing for me.
That might also be something that will help you depending on the person. But I think it depends on people to people, it's not everybody who has this.

 

[SDRSpark]

Also something that might be helpful for you if you work with asd people, make sure they interpret themselves correctly, especially if they have alexithymia.
An example of what I mean :
I need to go in the living room to paint (not draw, but paint), and I was feeling uncomfortable about it. My first interpretation of myself : "oh, that's surely because I'm anxious other people will look!". More than half an hour later, after a deep self conversation, I realized I completely misunderstood myself. I didn't want to go there because I dislike being interrupted if I'm focusing on something, and it's also noisy. Pushing myself to do that did create anxiety, but anxiety wasn't why I didn't want to do that. It's just a preference I have.
A person with alexithymia might not interpret well his/herself. If you start addressing this issue on an anxiety perspective, it won't be solved because it's just something that's irritating me to be interrupted and to work inside noise. If you address that by trying to change the environment and come up with real solutions, that might change my life. But I don't even interpret myself well, so that's even more complicated... I never noticed that I didn't like doing some things just because of not liking them, and that forcing myself to stay in this situation and pushing me WAS creating anxiety; not a classic case of "anxiety makes you avoid it". But because of alexithymia I might not understand what comes from what, it's confusing for me.
That might also be something that will help you depending on the person. But I think it depends on people to people, it's not everybody who has this.

This is something that I struggle with as well, to the extent that I've spent actual YEARS trying to understand why a specific event bothered me so much. I'd try all kinds of explanations and eventually be like "no, that's not it. No, that's not it...no, THAT's not it." and sometimes I never do figure it out.

That makes it extremely challenging at times to talk about feelings. People in general (not therapists, who I would hope would be familiar with these issues, although we all know that's not always the case) want to know how I'm feeling or what I'm thinking and the truth is, I don't know. Of course they want an immediate answer and I can't provide one. And they feel quite free to draw their own conclusions about what I must be thinking or feeling when I can't answer them immediately like they expect.

 

[Els]

This is something that I struggle with as well, to the extent that I've spent actual YEARS trying to understand why a specific event bothered me so much. I'd try all kinds of explanations and eventually be like "no, that's not it. No, that's not it...no, THAT's not it." and sometimes I never do figure it out.

That makes it extremely challenging at times to talk about feelings. People in general (not therapists, who I would hope would be familiar with these issues, although we all know that's not always the case) want to know how I'm feeling or what I'm thinking and the truth is, I don't know. Of course they want an immediate answer and I can't provide one. And they feel quite free to draw their own conclusions about what I must be thinking or feeling when I can't answer them immediately like they expect.

I don't know if it might help you, but in that moment I stopped trying to interpret myself and instead I self talked and really stopped to try to interpret or put a label on how I was feeling. For that situation : I started by "what's bothering?" (listing the specific points that would bother me in this situation) and then "why it's bothering?". I answered "because I dislike it/it's irritating/it's frustrating", not "because I feel anxious that...". None of my answers mentioned anxiety or something that was related to anxiety, they all were related to feeling irritated by the stimulus that would be involved, the fact that this situation IS disagreeable for me. They all were saying "this and this and this are irritating things", I never noted "I'm anxious". Then I asked myself "would I be anxious if someone saw my drawings?" (to check about the social anxiety) and the answer was "no, I'd be glad to show them and happy to talk about it". Really, I saw 0 anxiety. The anxiety occured whenever I wanted to push myself in a situation that would be disagreeable for me and difficult to stand. Just things that aren't my preferences/tastes. I detail here how I managed to figure it out in case it helps you too, it was an helpful process for me. What -> Why + checking if the avoiding behaviour was linked to any kind of "common" anxiety things I could think about. And taking the first answer that came honestly, not anything I could start to interpret or "make up" or start justificating. Really simple as if I was a kid almost, not really thinking deeply.
I stayed with those very basic things, and that really looked like me for once!
I don't know if that can help you. It was a cool process for me.
I also was alone and not talking to anyone nor judging myself. It's more difficult when talking to somebody. Most likely, no therapist would believe that being bothered by interruptions around me can cause such an aversion and an avoidance. Interruptions are really distressing and frustrating for me, it's always been the case. Noises as well. I surprisingly didn't find anything new under the sun, honestly. Just me and the preferences I always had. I remember after this process I realized I've always been this way. It's hardwired, not linked to anxiety, and most likely won't leave me, I won't transform into an other person.
If you go with my first interpretation that was wrong, we might work on something that won't lead anywhere. If you work on the alexithymia and let me explain, we might get somewhere and find solutions so that I organize in an other way that will make my life easier - and by extension make myself happier. Fighting this is a dead end, honestly, I tried for years, it was damaging and it DOES create useless anxiety, problems, and concerns. Forcing myself to do that would lead nowhere. Actually I know where it would lead : me feeling unwell before painting, while painting, and after painting, and needing recovery time instead of having spent a nice time in an other configuration. Is it worth working on this "avoidance behaviour" to try to make it different? No. No. No. Wrong approach. It's worth to make my life a better place for me, not the opposite at all costs especially when there are alternatives and short cuts. I've got one life, no time to loose on crafting myself indefinitely. But a person with ASD and alexithymia might struggle with that.

And yes, it's difficult, because people expect an immediate answer but it's impossible. They also assume easily that something you say isn't the truth and that they know better what you think and how you feel.
Just, LOL. Those comments can be really unsettling...

I guess we have to find out for ourselves as much as possible and be creative.