>> I edited this transcript to improve clarity and brevity.
Thank you so much to everybody for coming. And really, really, thank you for being the kind of parent who wants to figure out what works to help our autistic graduates advocate for themselves. Self Advocacy is the number one skill they need to know. They need to practice this skill both within our homes and in the workplace.
After working with autistic graduates for the more than four years, I found that their number one concern is getting a good job and doing well once they get that job. Everybody wants to do well on their jobs.
It's a mouthful. It's very complex to get a job and it's also very complex to do well in a job environment that is set up for allistics. Allistic is the word coined to describe everyone who isn't autistic. So it's just nice to have words to describe
Dr. Neff can't make it unfortunately, because she is not feeling well. What she did instead was record a chapter from her upcoming book Self Care for Autistic People. The chapter is called, “Discover the Power of Self Advocacy.” I really appreciate her gracious offer of the narration of her chapter. And you'll find it right at the When Autism Grows Up podcast.
The best thing about Dr. Megan Anna Neff, she says we can call her either Dr. Neff, or Megan Anna, she's fine with either one. She is a genius at simplifying concepts so that they get in our brains and stick PLUS creating visuals that help us take them in.
So she uses both the sense of sight and the sense of hearing to explain what’s happening. That’s how we really get it into our brain and have it stick.
Here's her simplest, best idea, the formula for self advocacy is:
Self Advocacy = Self Disclosure + Request
Those three things. I can always do three things in my brain. Much more than that, and it's hard for it to stick.
It is important, and I'm summarizing that chapter that she shared with us, to recognize that disclosure can vary in depth from the comprehensive to the limited.
When I talk to my graduates about advocacy in the workplace, they say, “I don't want to tell people I'm autistic.” Now the answer is, “You don't need to tell all. In fact, it may not be helpful.” Not many people are well-schooled on what's going on with an autistic brain. They just don't know what to do with the information.
Okay, what does limited disclosure mean? We tell them a limited piece of what it is that they need to know.
You simply can request what you need without any explanation at all. Here’s what you can say. “It's noisy in here. Let's move to a quieter place.” That's an advocacy statement.
A partial disclosure could be, “I have trouble listening and understanding when there's a lot of noise around me. So, could we move to a less noisy place like the booth or outside so that I can really concentrate on what I'm hearing from you?”
Good to know. She suggests that partial disclosures can sometimes be more impactful. The self disclosure explains why I need what I'm requesting.
And we can do some more examples in just a bit and I'll show you why. You'll understand in a minute why I'm holding off on more examples.
She suggests that we jot down a quick script ahead of time that can make the interaction go more smoothly.
Let’s rehearse what we're going to say and why. For example, “Last week, at that meeting, I believe I some missed really important things.”
So you know if you've noticed last week that you missed some of the details of an explanation that was given in the meeting. Good to know. It's hard sometimes for brains to take it all in.
And so the the request would be, “Could I transcribe our meeting so I don't miss anything and listen to it later. That way I can get the information that I need. On my own time.”
Maybe that's an interesting way to do it. Okay.
So here's another great idea from from Dr. Neff. And these are all quotes from the chapter in her book on on self advocacy and her book is coming out March 14.
So what she's saying is we need to practice self-advocacy. We're not going to be perfect at it the first time we try.
That's really important for us to recognize because just a minute ago, I violated the rule to not suggest advice or criticize my my graduates and I just did it. They were saying that the situation they're facing right now at three o'clock. They anticipate it's going to be difficult.
So I was suggesting that they could advocate and I was telling him how to do it. And I recognized, “No, that's not what they need. What they needed was for me to just reflect the emotion and summarize that you know what they said in a soundbite.”
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I'm still learning all this. I'm still practicing being the guide that my graduates need and I've been doing this for a very long time. Our oldest is 54. Our youngest is 27. I've been with them with the 54 year old since they were 13. So it's been more than 40 years I've been trying to do this so I'm getting better, but I'm not perfect. Which is a good thing to keep in mind.
But that's okay. I don't have to be a perfect parent as long as I show up. As all we have to do is show up and do our imperfect best.There's some good research behind that.
The second thing is that she mentioned that sometimes people don't get why you need these accommodations.
Some people just don't understand that there are lots of different types of brains and they all function differently. There's 8 billion people today. Tthe percentage of people with autistic brains is somewhere between three and let's say 5%. Out of 8 billion people there are 240 to 400 million people who have an autistic brain. It means that their experience in life is different from those without an autistic brain.
The whole world is set up to accommodate the middle of the bell shaped curve. School is, work is and so it doesn't often account for the differences in an autistic brain.
That's why the burden really does fall on the autistic person to advocate for what they need.
It's unfortunate, it sure would be nice if we could all be a lot more flexible in the way that we operate, you know, at home, at school at work, But it's not going to happen tomorrow. It's going to happen over time.
So we have to know these skills in order to get what we need in order to perform the way that we want to in various settings.
Dr. Neff gives us a tool which is a very helpful tool, but just remember that when we are asserting, we are advocating for ourselves.
There are some people who just don't get it and that has says nothing about you, your graduate or them frankly.
It just means that they just don't understand. You're trying you're trying to connect with them and they just don't understand. That's what it means.
Dr. Neff gives us gives us a tool called the self disclosure thermometer.
She says, “People like me, with my neurology, we tend to have all or nothing thinking.”
Sound familiar? All or nothing, black/white thinking.
Also it's not always safe to fully disclose.
You know, people don't need to know everything about us. So she offers us this neuro divergence self disclosure thermometer. It is available free at her website.
https://neurodivergentinsights.com/neurodivergentstore/p/neurodivergent-self-disclosure-thermometer
Here is her version. She's very comfortable disclosing she has sensory sensitivities. In the chapter of the book shedescribes a situation where she went to a restaurant and was sat at a metal table in a big open space. And she said she knew that wasn't gonna work for her because she could smell the metallic and it made her nauseous.
So she asked the waiter, “Hey, I can't sit at this table because the metallic scent makes me nauseous. Could you move me to one over there? That's a wood table. It's in a boot, so that I can I can enjoy my dinner?” and they accommodated her.
Good to know. She's also discloses that she has difficulty processing auditory information. Good to know right? She puts that one down there. She's comfortable disclosing that one.
In the chapter of her book, she describes where she asks to go to go outside to talk.
“My brain tends to interpret things literally.”
She's getting a little closer to being uncomfortable disclosing that. She'll probably do that only when she needs to.
Then she goes on up the thermometer.
“I struggle with details and regulating attention.”
How many of us have seen this happen?
Then she moves up to,
“Sometimes I misread cues, subtle social cues.”
“I experience executive functioning challenges,” meaning getting things done period. You know, we struggle with that.
I’m neuro divergent.”
She's getting into the real uncomfortable but she's worked her way through that because she has neuro divergent conversations is the name of her podcast.
“I'm an ADHDer, or I'm autistic”
She only discloses that to certain people, the people that come to her website, the people that come to her podcast, which is excellent.
So this is what we want to encourage our young adults to put together and we can do it for ourselves.
First, showing them that we're willing to disclose, to be vulnerable. The things that we need to accommodate.
Sometimes we have tastes that we prefer, you know, sometimes we have a limited palette in terms of what we're willing to eat.
Sometimes we prefer our certain types of clothing, we don't like zippers and snaps or a restrictive waistband.
Sometimes you just see them go through the list of all the things that come up that are perfectly normal for people with autistic brains, perfectly normal.
So let's come up with a list that we notice and then help them put it them on their disclosure thermometer, stack ranked by what we're comfortable sharing and what we're less comfortable sharing.
And that's how we prepare to be a self advocate. I think it's a wonderful, wonderful tool.
Here's another example. I have perhaps this network I have difficulty focusing and it's a bit distracting here. Is it okay if we sit in the booth over there away from the noise. There's another example of a of a self advocate advocacy approach.
Here's another one I have trouble taking in a lot. of information. Can I transcribe our conversation and listen to it later? I want to make certain that I don't miss anything important.
This is what I do with my graduates whenever I go to a doctor's appointment with them. I find doctors do talk really quickly and I know there's a lot of pressure on them to complete the conversation in a prescribed amount of time.
So, after asking permission to transcribe our conversation, I set my phone down on the space between us andI tap on the Otter app that I have on my phone.
Then we can go through it later. We can or we don't have to but at least we have it there.
Often I share that with other family members so that they understand what was said at the doctor's office because we are all concerned about each other's health. It's nice if they can't come to that appointment and having only one person at the appointment is what makes the graduate comfortable. Let's do that. Do it that way.
So, Dr. Neff concludes with a couple of observations in that clip that she that she read of the chapter in her upcoming book. She says that,
“Self advocacy depends on self awareness.”
There are some barriers to self awareness like
Interoception difficulties, when we have trouble feeling what's happening inside of our body.
Alexithymia, when we have trouble putting words to feelings
Or the fact that we're so used to masking that we don't always look for our own needs. Instead, we just take care of everybody else.
She recommends that, especially in the workplace, there is an organization that she finds helpful.
https://askjan.org/index.cfm
JAN is the job commendations network where you will find a lot of different descriptions things that need to be advocated and accommodated. She's found that that has been a really helpful resource to her people.
Dr. Neff’s reading of this chapter is available at the podcast and here is the link:
https://www.lynncdavison.com/podcasts/when-autism-grows-up/episodes/2148428971
You'll also find the transcript at the bottom of the page. Dr. Neff reads the chapter in her forthcoming book, Self -Care For Autistic people. It's available March 14.
It was really kind of her to narrate that for us. I really appreciate that. So you can hear her voice and just you know, she's just great.
How can we introduce these great ideas to our graduates?
So just print out that one page and just fill it out. And if you fill it out, then you're saying, Hey, I think this is important. You know, I'm really curious what yours would look like.
And then we can hopefully they would say something like, this topic just makes me frickin nervous. I can't even imagine, you know, making an assertion at work. See, that's perfectly understandable.
We're going to start at home. So we can practice this together. So I may advocate with you. I may say, “hey, at the end of the day, when you try to tell me about your problems, I'm beat and I can't take them in. So I would appreciate it if we would have these conversations when the sun's up.”
There it is. There's the assertion. There's the self advocacy piece. So you can also say, Hey, I'm going to practice the self advocacy here with you and I want to show you what what it looks like from my perspective.
So I say to you, “I'm exhausted at the end of the day, anytime after the sun goes down. If you give me a lot of information, I'm not going to take it in. So it would be great if you would, you know, you can text me you can send me an email or you can wait till tomorrow when I'm good taking things which are when the sun's up.”
Here is another example. “I’m tired right now and I just have a hard time tracking what you’re saying. So wait till i get a paper and pencil so I can write down what you’re saying. Because I may not remember half of what you said, but if I jot down some thoughts that you might jot down your thoughts will help me remember what we need to work on.”
You can see how we can use this tool. No one taught me how to advocate for myself when I was kid. We were expected, especially as women, to accommodate everybody else's needs, right? That's just the way that the human system works right now. For better or worse. So now we know how to do it.
It's self disclosure: here's the trouble I'm having plus the request.
That's it, those two pieces and we can disclose as much as we want. We do not have to disclose, you know, I just had a hot flash and I'm really uncomfortable.
You know, we don't have to say that. I mean, maybe they can tell from the flush on our face. But you know, whatever it is we we choose to disclose. Hey, look, I'm gonna take it in what you're, you know what you're saying right now? Let me grab a piece of paper and just hold that thought. And I'm going to start writing these things down so we can, you know, we can really look at it because I really do care. I really do care. I just can't, you know, I'm in a place where I can't take it in right now.
Lorraine: “My daughter hasn't gotten a job yet.
But she's always been in environments where people had an idea of what to do with people who have autism like I school and college were very accommodating. And she will be in an environment. Well, hopefully not. But you know, there's a possibility that when she gets a job, it will be she'll be dealing with people who are not as aware about what autism is. So I think this is going to be really helpful.”
Lily: “My son is going to graduate.
This is the first time I'm coming to one of your workshops. Okay. He hasn't even been diagnosed. Ah and so I'm just trying to find out what's going on. Yes, I see just just even listening to you just a little bit. I can see because I have tried for him for self advocacy. But he refuses. I don't know if you find that too. Too vulnerable? I'm not sure. And but he's going from job to job to job to job so as soon as there's a stressor. He leaves. Because he has no confidence that he can fix it.
He has called me in tears. Yeah. If somebody said something or they made a comment and I'm like, son, just you know, relax, you know, take a walk. And usually by the end of the conversation, he feels better.
But I have he's been to different counselors. He's never been identified as in the spectrum. And I really don't know what to do because now he's at the corner of light. Nobody can help me. How old is he? He is 26. He's 26.”
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Okay. Yeah. One of my graduates was diagnosed at 30. So I've done that. Wow.
And i feel regret. Why didn't I see that? Right, these other diagnoses masked what was really happening. Exactly, exactly.
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“And so like I said, right now, I am not sure you know how to proceed with him. But I did talk to him last night and I said, Hey, you know, maybe we need to talk to a coach. And he was quiet. So he didn't say no. And this was kind of like an expectation of this meeting today with you. Oh, good. So I hope that you know, he continues this path and you know, we shall see.”
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And so, what I would do with a 26 year old who's not diagnosed, but is giving us a pattern here. Just start talking about what are the most obvious things you're noticing.
Just start a list. “I'm noticing,”you know, “that at work, when there's a conflict, you have no confidence in solving it. And so you leave.”
Then what's the next thing that you notice? Not as obvious but the next struggle you’ve seen.
Share your observation and then just stop talking. This is the hardest part because we moms love to solve the problem, right? I took me a year of walking with my suicide ideating son to just zip my lip because I love him so much.
And frankly, I love him just where he is. I don't care. You know, I don't care that he doesn't fit in that I don't want everybody in the world to fit inside of the darn bell shaped curve. I love the people on the outside. I'm probably one of them. So God you know, I know my I know that I have lots of relatives out over there and I love them too. So why would I want to change them?
So you can say to him, these are the things I'm noticing. Zip your lip and see if his thoughts come out.
And when they do come out, record them and just keep that's your next step. Your next step is just to listen. It really is.
The formula for listening is emotion plus sound bite summary.
Okay? So the emotion is you seem reluctant. You seem uncomfortable to resolve that problem at work.
There's the soundbite that tells him you've seen him.
I find it really safe to go with uncomfortable as the emotion. You don't need to be a poet and pinpoint exactly the emotion they're feeling. Just dropped that pressure and say, “You seem uncomfortable.”
The next thing you say is the soundbite summary.
So you'll see maybe that's what is happening.
Only three, only one out of four autistic people live independently, according to the research that I could find, which is not easy to find.
So if that's where she ends up, that's where we ends up,
But I want her to be fully equipped with all these tools. I want her to know all this stuff and have practice them so that when I do my quiet, smooth exit from this world, the only thing she has to worry about is her grief. She doesn't have to worry about being okay.
Lily: I think that's the worry for most parents is, how are they going to survive after you're gone?
And it's interesting. I mean, more and more people with children in the spectrum that they don't know that they're in this room. I'm like, Oh, I think you know your 25 year old 24 year old and so it's interesting because it feels like we have a whole generation of children that are there and there's no safety nets for them. Aside from from family, and even you and my husband, this is my second marriage. His son finally found housing but he wanted to leave the money to the daughter so that money so she could manage the money. And she said no. And there's a way you can make her there's there has been a lot of negative interaction in between them. So you need to have somebody that's neutral. And you know, it was really hard he was just diagnosis almost learning. And he doesn't have any relationships with any other family. He never pays an enemy. Yeah. And so anyway, different story”
Lynn: my mother's second husband’s son had trouble with money as well. They set up a trust. And they that is how the money has been distributed to him. Yeah, so it can be done. And yeah, I just thought about that. This morning. Oh, he's probably neurodiverse.
Exactly. And even when you just listen to the news, single males living with mom and dad, he's not diagnosed with you know with anger issues or you know, tantrums, regulation problems. Yes.
Dr. Neff says that she's late diagnosed autist as well, that she was diagnosed at 37.
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Oh my gosh.
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So this is not uncommon, especially with women because it's different.
There are a lot of resources for late-diagnosed autists.on line now though. For people that are diagnosed later. There are a lot more you know, there's discord. People in places where they can go.
So, just like I said, just reflecting and writing things down, and not trying to rush into a solution, because frankly, getting a diagnosis. What's that going to do for you? You got diagnosed. Now, you still got to figure out what works.
And the thing that really that pushed me into my depression dip after 911 was I kept thinking, “I don't know what to do.”
Yeah, sounds so innocent. But it was really detrimental because the result of saying that sentence made me feel helpless. So I just, you know, kind of spun on all the things that could go wrong. And as a result, that thought put me into a depression. Right?
If I do a TED talk, that's going to mean the main message. We don't want to repeat, “i don't know what to do.” I don't know everything to do. And that's okay. I know the next thing to do. The very smallest next step I can take.
With our kids as always, you know, you can't go wrong with listening. Listening is love. That's how I love them at this stage of the game.
We just started to start to gather up options and start an experiment. The minute our brain notices things, it's going to pull more from the environment. YouTube channel, you can always watch stuff there. Search for late diagnosis, autism. That seems to be their favorite place.
They are a little reluctant to read blog posts, right or articles or whatever. They go to YouTube. Sometimes they in their screen usage we'll find time to watch someone else sharing their late diagnosis.
The other thing I found really helpful is texting. I really find that texting really works better if it's something controversial we need to discuss, especially if I know they're gonna have a bad reaction to what I have to say.
“You know you're gonna have to pay for that accident you just had in the car. We're not going to claim it. If it is around $3,000 or less we don't claim it anymore because our premium goes up and we risk losing their coverage.
You're paying cash because we've learned that helps motivate us to learn what prevents accidents from happening again.
If it is just a fender bender, I figure they should pay.
Sometimes it's good to just say here's what you owe us this month in a text.
Make statements rather than ask questions.
“What were you thinking?” Not a good question.
Yeah. Doesn't even work with me.
Why did you do that? Why did you do that? Well, if it was a logical thought at the time
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so I understood I'm sorry. I
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made a mistake. Driving into this it was in the snow there was underlying ice, you know, they didn’t pump the brakes, went into panic mode froze just push the brake down. skidded right into the stop sign. Yeah. Now it's not the first time in our house.
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That's why I moved to Florida.
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We can all laugh about it. Oh
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my gosh. Yes.
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Yeah. Yeah. All right. Well, thanks. Thanks, everybody. You got 10 extra minutes. Thank you. permission. Yes.
Lorraine: “I have a lot of thoughts. I mean, it's really great to hear where other people are with their kids and see how that you know, bodes for my daughter. I just feel like I wish I had a lot more time one on one with you, Lynn. I'd like to talk about things that I don't want to overly share, you know what I mean? She doesn't want to hear my thoughts all my thoughts about her.”
Lynn: I am in the process of creating an online community. I'm following Dr. Neff’s lead. She has a wonderful community that is for autistic people, and for autistic clinicians that are affirming neurodiversity.
I'm in a part of hers and I just haven't finished getting it going yet. But so what I want to do is just continue to encourage you to you know, to open up my emails and I'll continue to email you
Lorraine is in a special program. It's the VIP introduction to the art of adulting she signed up for 15 One hour, one on one with her and her daughter, and that's the only way I do it. I will only do it with both the parent and the graduate. I don't want to I don't want to be the guide. I want you to be the guide and I'll be the helper. Because you're going to be with them for the rest of their lives, I doubt you're going to pay me for the rest of your life. So I want to make it so that you can do all of this and that's what Lorraine is referring to the one on one conversations that we do have and got it we'll do a wrap up Don't worry. We'll do a wrap up.
I only do a few each year,though, because I just don't have enough time on my calendar. So I thought I'd use do one at a time.
Both Eileen and Paula by the way are also are in the program which is $100 a month. They didn't have the VIP Introduction and they're doing well that way, too.
So I'd love it if you join The Art of Adulting for sure. That's where you get me six hours a week. Got it.
Thanks, everybody for coming. Once Dr. Neff publishes her book, I'm gonna see if I can get her here live.
Awesome. All righty. Thanks.
