Helping your child transition to adulthood isn’t for the faint of heart for any parent… but when you're helping a neurodivergent child navigate the process, it’s even harder.
Sure, there’s help– if you know where to ask for it. And your locality probably has a system or service that can offer support– but it has a different title in every state. And don’t forget that the type of diploma or certificate your child receives from high school can affect the type of support they can qualify for.
Feeling overwhelmed yet?
Well, before you start hyperventilating, in today’s episode, we’re sharing all the things we’ve discovered while launching our neurodivergent kids, so you’ll have an idea about what support to look for when it comes to your own kids.
We’re covering Medicaid, job programs, when the school transition starts, where to look for support, and even the personality changes our kids undergo through this process.
If you have an older neurodivergent child and you’re feeling overwhelmed about the future, you need this episode. Let's dive in!
Quite frankly, we need your help to keep this podcast going. If you want to support us and the production of YDWAHR, consider donating to our GoFundMe here: https://www.gofundme.com/f/fund-the-future-of-you-dont-want-a-hug?utm_source=customer&utm_medium=copy_link&utm_campaign=p_lico+share-sheet&attribution_id=sl:05e43f5c-1789-4820-8549-9a5b3e1f75f6
In this episode, you’ll learn...
[02:18] Why we’re talking about what the transition to adulthood looks like with kids on the spectrum
[04:39] A Rylanism and Grahamism to lighten the mood
[09:41] Where to start when it comes to helping your neurodivergent child transition from school to adulthood
[15:09] Gwen’s experience of struggling to find information on the services available for the transition process
[22:55] The difference between guardianship and power of attorney for our kids
{25:05] What Medicaid qualification looks like for some of our kids and who can help you navigate the process
[29:00] Some educational considerations and decisions to keep in mind during the transition process
[33:23] How the transition to adulthood changes our kids into radically different humans
[41:34] The Last Word with Rylan and Graham
If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.
Resources for this episode...
Transcript for "Adulting on the Spectrum: What the Transition from School to Adulthood Looks Like for Our Neurodivergent Kids"
Gwen:
If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside neurodivergent humans, you are in the right place. I'm Gwen.
Kristen:
And I'm Kristen, and together we have decades of experience parenting fiercely amazing neurodivergent humans, as well as teaching, writing, advocating, and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins.
Gwen:
Welcome to You Don't Want a Hug... Right? We promise to come at you each episode as our true selves, sharing the hilarity and delight in the midst of the heart of our journeys. You'll also hear directly from our kids at the end of each episode.
Kristen:
Most importantly, we hope to remind you of your immense value as a human outside of the caretaking role you play, so grab a cozy blanket and a beverage and go hide in a closet near a stew. Hey, Gwen.
Gwen:
Hi, KK. Are you okay?
Kristen:
Yeah, I was just choking on my own spit. This is apparently something that happens when you're older. You just randomly choke on your own spit.
Gwen:
I think it is a more interesting way to kick off the episode than our normal way.
Kristen:
We have so much to talk about today.
Gwen:
Always, always. We're both closing our eyes right now.
Kristen:
Yep, so we can center ourselves, this is the big topic.
Gwen:
Kristen was just in Germany, just like galavanting? Is that the right term? Gallyvanting with her husband?
Kristen:
Not gallyvanting, galavanting. Galavant.
Gwen:
Well, gallyvanting? I don't think you are correct. Oh, my God. Gally, gallyvanting feels correct to me.
Kristen:
Okay. Okay, we'll go with... Since people just tend to go with what feels true these days, we'll just go with that.
Gwen:
That's true, that is so true. You drink your water, clear up all the phlegm.
Kristen:
Okay, I'm back in-
Gwen:
Hi. Hi, listeners, it's us. We're here and, today, we are talking to you about the transition to young adulthood for our neurodivergent children.
Kristen:
Yeah.
Gwen:
It's a doozy, and Kristen and I are the right ones to talk to you about it. Why? Because we have four neurodivergent young adults.
Kristen:
Count them, four.
Gwen:
Count them, four, and they are all doing lots of transitioning in lots of different ways. None like the other, though.
Kristen:
No, none like the other. We have a good sample size, I think, of the different ways that this can look in terms of... Some of our kids are regressing a little bit, some of our kids are really pushing outside of their comfort zone and doing crazy things, learning a lot about themselves as they go, but it doesn't look the way any of us, including themselves, thought it was going to look.
Gwen:
And some, I might add, are doing an equal measure of regressing and accelerating, and it's hard to know what you're going to get on any given day.
Kristen:
Yeah, that's very true. We've always known that our kids have the kinds of brains that don't make progress in an even incline, right? It's like a stair-step situation. When one skill locks in, other skills might fade away. I don't know why I am once again surprised by this phenomenon, but I am and I'm having to do just as much work on myself right now as they are and learning to take that focus off of helping them and helping myself understand where they are and why they are where they are, and that it's okay that they are where they are has been a struggle.
Gwen:
This is an excellent point, and I think we should jump into that right after we do our Rylanisms and Grahamisms, because I don't want our listeners to bemoan us for skipping over those.
Kristen:
Okay, sounds good.
Gwen:
Bemoan, was that the right word?
Kristen:
That was actually the right... Yes.
Gwen:
Thank you.
Kristen:
Very eloquent, Gwen.
Gwen:
Thank you. All right. I know you have a Grahamism right on the tip of your tongue.
Kristen:
I do have one ready to go. Our kids turned 21, this is a whole other conversation.
Gwen:
Gosh.
Kristen:
They turned 21, so we've been in Germany for a couple of weeks. We just got home, Graham had great support from my mothers-in-law, Diane and Dorothy. They were amazing in really keeping him going and feeling connected while we were gone. We got home and Graham and I went out to dinner last night to a great little bar on Main Street. Great outside seating, there's a fireplace. It was just a lovely, lovely fall evening, and he didn't bring his ID, so he didn't have a beer, but he did have a sip of mine. Thought it was okay.
Gwen:
So weird.
Kristen:
It's so weird, but he was talking about wanting to have a girlfriend and feeling too afraid, so we were talking about using online, blah blah, blah, and I said, "You could have a mentor now that we have the waiver services and somebody that can go out into the community with you," and said, "Take this bar for instance. There is a really nice outside seating, they have live music and they have an area where you can play cornhole." And Graham said, "Don't you think cornhole is like the swear word of games?" And I was like, "Yes, yes I do." No, he said it was the vegetable swear word of games.
Gwen:
What vegetables?
Kristen:
The vegetable swear word of games.
Gwen:
What was Graham picturing in his mind, do you think?
Kristen:
Well, probably a hole that corn might come out of.
Gwen:
I think that his humor is going to serve him well when he begins dating.
Kristen:
I think so, too. Except that the girl or guy, whoever he chooses, just might be like, "Yes, I do think that."
Gwen:
Exactly. "That is a valid point, Graham."
Kristen:
So true, no laughter.
Gwen:
No, no. None of that. No laughter. That's a great Grahamism. All right, I'm choosing a Rylanism that will incorporate all three of my children. Okay, so Reagan, my 13-year-old, I can talk about this now without vomiting in my mouth, has a boyfriend and this boyfriend has stuck around for eight months, right? So we are locked in to the boyfriend at 13. It's very innocent, whatever. This is not an episode about neurotypical children dating. She, for 24 hours, maybe 40 hours, broke up with said boyfriend. Right?
Kristen:
Oh, my gosh.
Gwen:
It was a lot. Our other daughter, Em, was just fully embracing her. The 17-year-old embracing the 13-year-old, "We can do this together, we are going to get through this." Reagan was crying as she broke up with him on the phone, she was crying after. They went on a walk, they got their feelings out. Big deal. Rylan was present in the house that night, so he knew that this happened, Reagan broke up with this kid. Well, 40 hours later, I am organizing this massive event for 600 people that I was contracted to do and she's texting me, "I made a mistake, I still love him." Yes, that is what she said, "I need to get back together."
I was like, "Okay. Great, this is perfect," so she does. She gets back together with him, lots of tears, he's been crying at school, blah, blah, blah. Big deal. Back together, that's all we talked about. Rylan was present, right? For all of these conversations. A few days later, the boyfriend comes over, he's joining us for grilling out that night. Rylan walks into the kitchen where he is standing with Reagan, the boyfriend, and Rylan goes, "Huh, what are you doing here? Reagan broke up with you a long time ago."
Kristen:
See, I think the key to that story is you thinking that Rylan was present for those conversations.
Gwen:
Right. We all just looked at him and went... I can see the kids' eyes welling up with tears. I'm like, "Oh, God. No, nope. They got back together," and Rylan rolls his eyes. He goes, "So dramatic," and then he was out.
Kristen:
Just drops a bomb and then he's outie. "I'm going to go play my game." All right, that's a good idea, I think. I think the boyfriend is going to appreciate that. Oh, my goodness.
Gwen:
Yeah, but that's the point. He's there, what he's queuing into, you just don't know.
Kristen:
No, you really don't. You don't know.
Gwen:
Okay, so I want to go back to, well, this topic of transition to adulthood. First of all, I had no idea, before I legally had to know, because it wasn't done, that our kids are required by law, if they have IEPs, to start a transition IEP at the age of, what? 13?
Kristen:
14, 15.
Gwen:
14.
Kristen:
You did not know that?
Gwen:
I didn't know that.
Kristen:
So many people don't.
Gwen:
No, I had no idea.
Kristen:
Yeah.
Gwen:
He did not have one until sophomore year of high school.
Kristen:
Wow.
Gwen:
Maybe junior year, because the old district he was in just never did one.
Kristen:
Wow.
Gwen:
They never did one, and I know now this district we're in is doing it, because I just got notified that it's time to do Reagan's, because she's 13 and they want to get on it, which is just crazy. Mentally, I'm trying to not really put myself in transition for her, even though it's technically time that we're doing it, because I have these other two, because we just got a 504 for Em, so now it's... We're three for three.
Kristen:
Okay.
Gwen:
And all completely different.
Kristen:
Yes, I'm familiar with this.
Gwen:
Now we have dyscalculia for Em and then Reagan is dyslexia, so just...
Kristen:
Here we go.
Gwen:
Here we go. Anyway, that's the first thing to note. Don't assume your district is going to implement a transition IEP, but that is when it should happen. Maybe you can talk to us more about what the transition IEP, how that's different from the regular IEP.
Kristen:
It's different because it's supposed to be focusing on developing skills that are around goals for adulthood. Now this is a bizarre concept for any kid that age, but especially for our kids, because the realistic goal is something that you need to be participating in and the team needs to be participating in. There are assessments using Onet, which if you haven't checked that out online, please do, because it really helps look at all different kinds of jobs that our kids could have in the world. It's a pretty substantive database.
Gwen:
What does that stand for, Kristen?
Kristen:
Gosh, I don't know. I have no idea.
Gwen:
It's just onet.com?
Kristen:
Yeah. The assessments are linked to trying to determine what kinds of skills your child has and what interests they have, and then aligning goals towards that, whether that's community college or a trade school or working with a provider to get them towards those goals, so that's the big difference, is that those goals are shifting towards that next step beyond secondary, whether it's what's happening in a transition program or in a college setting or in a trade school or in a job. Now, another piece that people aren't aware of is that they should be working with a SWAP coordinator, which is a School to Work Assistance Program. Every high school has a coordinator for SWAP and they should start working with your child as early as freshman year, so that they're looking at developing all kinds of skills, aptitudes, and exposure to different jobs, to different opportunities post-high school.
Gwen:
Okay. I just need to stop you a minute, because you have said the word "SWAP coordinator" to me in the course of our friendship, I don't know, 683 times, I have pretended every single time to know what you're talking about. Every single time. I have never been told or heard about this person, the SWAP person.
Kristen:
Yeah.
Gwen:
What you're telling me right now is that we should have had a SWAP coordinator in high school.
Kristen:
Yeah. Yes, and often, you have to ask for them, which is something that we've all experienced throughout all the phases of our kids' journeys is you don't get what you don't ask for, but you don't know what to ask for. This is the Catch-22 of our lives.
Gwen:
It is. We should do a whole episode on all the things that you have to ask for that you don't know you have to ask for.
Kristen:
The other thing is that, in Colorado, Voc Rehab, the division of Vocational Rehabilitation, is another agency that helps with work and career development. They can get involved at the high school level and work with the SWAP coordinator to provide paid internships, and they can do it on a youth... I'm really fuzzy on this, and so listeners, if you get this better than I do... We will have some people besides ourselves come and talk about these things, because clearly, we don't know what we don't know. But the SWAP coordinator can do that work with Voc Rehab on some youth mechanism, and then once they graduate high school, they can go onto an adult plan with Voc Rehab.
Gwen:
This summer, I think I've mentioned this briefly, in the midst of onboarding our third teenager into the family, I was trying to research all these things, the Voc Rehab being one of them that I solely learned about myself, because nobody's ever mentioned them. Every state has this, ours is Michigan Rehabilitation Services, and in theory, they have a ton of resources and ability fully funded to walk alongside your child. We just had our second meeting with Voc Rehab and have a long plan, so what that looks like is you meet with them and they have to identify that you do qualify, your child does qualify to have a case with them, but if that happens, that's ongoing. Like Kristen just said, it can start in high school where they meet with them at school, they can be out in the community with them, they can do on job training.
Ours is going to go into the grocery store where Rylan works and work with him and his supervisor on... He's been there two years, he's never had a meeting with anybody there to talk about how he's doing or what he needs to improve or what he's really gifted at, so this Voc Rehab person will go in and have those conversations and act as that conduit between them, which is great. Then their goal is to get them permanency in the job world. For us, that will mean following him through college, and that will continue with him until after college. That is definitely a resource everybody needs to be attuned to, because they probably won't tell you about it.
Kristen:
No, and once our kids graduate from high school, they can still access the SWAP coordinator until they're 26. 24 or 26, but they're still geared towards the high school population, so they won't actually do on the job coaching, they'll just help you in the job search and the interview process, which isn't really what we need at this age for our kids. Then I had to argue with Voc Rehab around, "I don't want SWAP to be the provider, I want somebody else to be the provider in the community," and there was pushback around that. I couldn't possibly do that, and I said, "Actually, I can do that. I have input on who the provider is and I can show you data that the SWAP coordinator is not what we need and isn't able to provide the onsite job coaching. That's not their role." Well, SWAP and Voc Rehab were having an argument over what their roles were on the call, so they don't even understand what the roles are.
It's all very, very confusing. I'm sure this is not a shock to anyone, but even though there are services available through the state and fed funding, it's missing an entire layer of support, and this has always been true, but we're finding it, in adulthood, is the same. Same challenges that we've always run up against, and that is we have a long-term condition with short-term interventions that aren't focused on, "All right, are you even looking at the environment that my kid is looking for jobs in? Because even though he has this skillset, he can't tolerate this environment." Hence, the whole toy store scenario, right?
Gwen:
My favorite.
Kristen:
I mean top-notch management, but...
Gwen:
Out.
Kristen:
I'm out.
Gwen:
He was out.
Kristen:
I am out in less than a day, because even though Graham is very social and will tell you that that's one of his strengths, he's very specifically social and he cannot handle background noise, so screaming children and irresponsible parents apparently, two nos. Two nos, two strikes.
Gwen:
He doesn't need three strikes, Graham. He's like, "No, I can only tolerate half a strike."
Kristen:
Right, and his social interaction has to be pretty structured and has to be pretty flexible and not mandatory all the time, so there's a lot of digging that needs to go into finding the right environment. We had to go and hire a private company, they're called First Ascent, and this private company is helping us develop a career plan, which is something that you would think Voc Rehab and the SWAP provider would be doing, and they are to a certain degree, but this is much more layered.
This approach is really looking at, "What really are your core skills, and what are those environments that you can tolerate and what are those environments you can thrive in?" And we've narrowed it down to 20 careers, then we're going to narrow it down to three, and then we're going to do an intensive search within those three, and then we're going to create a plan moving forward. I'm still trying to figure out how Voc Rehab or the SLS waiver, which is a Medicaid waiver we also just got on, that's a whole other process that we've been going through for nine months, that somebody can pay for this, because this is not being offered by those state agencies.
Gwen:
Yeah, I was just going to say that sounds like something that Voc Rehab would fall under their umbrella of being able to pay for. Just through my own research recently, Kristen realized that she didn't know that Voc Rehab can pay for college.
Kristen:
Yeah.
Gwen:
You just don't know until you ask the right questions, and I learned that through Beacon College, which I'll say right now we are waiting on his acceptance letter. I decided I'm not going to announce it, because we're waiting on his acceptance letter, which per an email with a smiley face and lots of positive words like, "He was wonderful," I have to assume is a yes, but I'm not letting myself jump for joy until the letter arrives, which we expected this week. Anyhoo, we learned through Beacon's financial aid resource and a call with her, she said Voc Rehabs across the United States pay significant amounts of our students' tuitions. You don't know that, and it hasn't been offered to us by our Voc Rehab, but they did say, "These Michigan College programs that have autism services, those are programs that we can pay for."
The money is there, it's just a matter of who your particular caseworker is, what he or she knows, what he or she, they know, and what you ask. That really is why we want to put out as much as we know, because you shouldn't have to spend three months like I did just to the grindstone trying to figure out, "Well, what does Medicaid even mean? Does he qualify for Medicaid? Because he's going to be 18 in March," and all of a sudden, I have to have medical waivers signed off by him from all his providers if I'm even allowed to have conversations about his medical care, which he won't drink a cup of water without my permission right now, so let's talk about how we're going to accomplish that. What are the different ways? Do I need to have power of attorney? Kristen, of course, is like, "No, he needs to have some autonomy." I mean, the layers of conversations and things that you need to know and understand, and the agencies you need to talk to, are unending.
Kristen:
Yeah, and let me just clarify, power of attorney is something you want, it's the guardianship you don't need to do, right? Full guardianship is incredibly, incredibly invasive and there is a move towards supported decision-making as opposed to full guardianship, but our kids are looking for independence and autonomy, but they don't have the skills for that yet, a lot of our kids.
Gwen:
Yeah.
Kristen:
This is a very challenging phase where they don't want you to be reminding them to be their executive functioning, but their executive functioning is still not online, so it's incredibly challenging to try and operate in the way that we have when they were children and try and adapt to, "Now we have a young adult that's not ready to launch in a typical way," but we're trying to figure out, where do we give them autonomy and where... Let's just be honest, our kids don't just make a mistake and learn from it. It's not love and logic, so... I know, it gives a shiver up my spine. It's not like they're just going to learn from natural consequences, they don't have the skillset.
Gwen:
But Kirsten, I love you too much to let you make this mistake again.
Kristen:
Okay. God, help us. Love and logic. Yeah, it is challenging. Even if somebody did tell me that they pay for college, I might not have even remembered that, because it was one person that said it in a passing conversation. One of the things that I wanted to let people in Colorado know is that, at Children's Hospital, there's a transition clinic and they now have a benefits coordinator attached to that transition clinic that will help navigate all of these different things around Voc Rehab and Medicaid and all of these agencies, and that's something that's new, because the medical model's really looking to expand beyond that clinical setting and help families in a more holistic way, so I think that's very cool.
I think a benefits coordinator is incredibly helpful. I know that we weren't even sure that Graham would qualify for Medicaid as an adult, and the way that you do that is they have to have a score on a number of assessments, either a cognitive assessment or an adaptive assessment, like the Vineland or the ABAS, that's 70 or below or within the confidence interval of 70 or below, so it could be one point or two points above if it's within the confidence interval.
Gwen:
Is that a score that we would have on his most recent neuropsych?
Kristen:
Well, it depends on if they did one of those assessments, so you should definitely look and see. With a neuropsych assessment, I would assume they did one, but the problem for our kids is that their IQs are above average, but Graham's adaptive score was below 70, so he was able to qualify for services that we were able to get through Developmental Pathways. They're the people in our county who allocate the funding for the Medicaid waiver, the Supported Living Services waiver, and so then we had to go jump through hoops to do the SIS assessment and this is looking at what score you get for the amount of support you need. I can't tell you the amount of hoops we had to jump, and then he had to qualify through Medicaid for long-term care. These are three different agencies involved in the approval of his adult waiver services. It took nine months. It was insane.
Gwen:
And Kristen, who knows her shit.
Kristen:
I know my shit and it was confusing for me, and I don't feel like I had a leg up in knowing my shit. It only just pointed out to me how, even when you are really connected to resources and people who know, it's still a challenge to know how to do it.
Gwen:
Yeah.
Kristen:
One of the agencies that really helped us in applying for Medicaid was called Ames. I think it's A-M-E-S, and they will help you, for free, do all the Medicaid applications. Unbelievable.
Gwen:
Are they a national organization?
Kristen:
I don't know if they're national, but we will put the resource in our notes.
Gwen:
Yeah.
Kristen:
At least for our Colorado folks, they will assist you in that application. It looks like it's appassist@accessenrollment.org.
Gwen:
We'll link it.
Kristen:
We'll link it, and you can call and make an appointment, bring all of the documentation for their life.
Gwen:
Do you mean the five binders that we have?
Kristen:
Bring the binder, bring the box, and just dump it on their desk and they will do magic. I had never heard of this and it's free. Please, look at that resource if you're trying to navigate how to set up Medicaid for your young adults.
Gwen:
Yeah, and I don't know if Rylan will even qualify for Medicaid, and here I am, he's almost 18, and we need to figure this out.
Kristen:
Well, we didn't figure it out until our kids were 20, so I get it.
Gwen:
I'm not going to rush that then.
Kristen:
Well, I mean do better than me, but...
Gwen:
That's not hard. Okay, just kidding. She's amazing, she's amazing.
Kristen:
Whatever, whatever.
Gwen:
Okay, so these are the technical things. These are the technical agencies that we don't know that we need desperately to know, so Kristen and I have both... I mean, she's much further down the path, but this is very new to me still. When we're looking at graduating from high school, they might not even talk to you if they don't have a transition IEP meeting about the difference between a diploma and a certificate. I didn't know that about that.
Kristen:
Yeah.
Gwen:
A diploma is what most kids get when they graduate from high school, but for our kids who don't have the cognitive skills to graduate with the traditional curriculum or they have to meet certain criteria for graduation... Well, I know, because I had to know and research, that you can do a modified curriculum, a personalized curriculum, so Rylan has been exempt from all second language and from certain math classes, and he's still able to graduate with a diploma. A lot of people don't know that. I just talked to a friend the other day whose daughter graduated five years ago with a certificate, because she couldn't meet some of the basic requirements for graduation. Well, nobody told her that you can do a personalized curriculum, but you can. You don't even have to have an IEP to do a personalized curriculum. We just got one for Em, so that she can get out of algebra two, because if you have dyscalculia, you shouldn't have to take algebra two.
Kristen:
Right.
Gwen:
Anyway, these are all things to know. I think a personalized curriculum is going to be your right in any state, but you have to know to ask for it and to print out the low form and to submit it, and then they will evaluate that. But if you don't meet their core requirements for a diploma, they graduate with a certificate, which then allows you to get a lot more service post graduation than if you have a diploma. At least that's true in Michigan. Is that true in Colorado?
Kristen:
I don't know that that's true. I know that, for us, Graham didn't get a diploma when he graduated, because he went into transition services, so he continued to have special education support, which your children who have an IEP, and if they qualify for transition services, they can get through the age of 21, through their 21st birthday, or that semester of their 21st birthday.
Gwen:
Yes, that is the same. What you just said is the same, so you don't get transition services if you graduate with a diploma.
Kristen:
Right, but once he left transition services, he did get his diploma.
Gwen:
Okay, that's good to know. In Michigan, you get transition services, I think it's 26, so every state is different. You just have to know what your state's rules are as far as age. Rylan will get a diploma, which means he does not get transition services through the education system, but he will still get Voc Rehab services and other disability services if you have a case set up with them. These are things that we need to be doing in high school, so that when they graduate, you have those supports in place ready to go.
Kristen:
Right. It's the same, we're talking about two different things, so yes, up to 26, you do get those supports and services, but transition services through the school system is through the age of 21.
Gwen:
Okay, and that's not different on different states?
Kristen:
No.
Gwen:
Okay.
Kristen:
All of that to say it's confusing as hell, and we're not even talking about the social-emotional pieces of young adulthood and how hard it is for our kids. I know for our family, for some of our kids, the idea of being an adult is very scary and not something that they were looking forward to, and they really are hard on themselves around adulting and have really high expectations for themselves that they can't meet, and then they're depressed, because they can't meet them. That's not Hayden. Hayden is having a different experience, because he's not autistic, but my other two are really struggling with those things.
Gwen:
I think something to touch on, something that surprised me the most about transitioning to adulthood, is what a radically different kid Rylan is now.
Kristen:
Yeah, you've said that. Say more about that.
Gwen:
We were watching home videos last night with all the kids, which was so fun. Em just loves to see what they were like when they were little and she doesn't have any videos of her own, so she relishes in watching them, and Rylan was just like his middle name was Joy. Everybody that knew him, if you use one word to describe Rylan, it was "Joy." He was always joyful, he was always talking, he was always moving, he was always inventing and creating. He was the life of the room, whether he should be or not. You knew, the second he entered the vicinity, that he was there. He was, "Look at me, I am happy. I have this squeaky voice all the time like this." He is none of those things anymore. He does not emulate joy, he doesn't emulate the opposite of joy, but he's just more neutral.
He's very hard to get excited or upset, he has this low grunty voice now, he hides in the corner, he doesn't want to be seen, he doesn't want to speak publicly. He would never stand in front of a room and launch a book like he did when he was younger. I mean, he led an auditorium full of people with the mic, he was in the audience. He wouldn't be caught dead holding a mic, let alone speaking into it.
Kristen:
Not because of social pressure.
Gwen:
Well, I've wondered that. What caused it? Is it puberty? Is it the auditory listening program that we did? Because he became so much more self-aware, which we want for them. I mean, there was no self-awareness in his younger self, and I think that was part of what caused him to be so uninhibited.
Kristen:
Yeah, yeah.
Gwen:
As we're watching videos last night, we were just cracking up and Emma's like, "Who is that kid?" And Rylan's like, "Yeah, go and act like that at high school and see what happens to you."
Kristen:
Interesting. I can't believe he said that.
Gwen:
Yeah, he said that. I do think it's a combination of a lot of things. I think the self-awareness is at the crux of it, that he has just felt like, "I'm not drawing negative attention to me. Teenagers are mean."
Kristen:
Yeah. Well, I think that's why Graham has spent the past two years in his bedroom. He's still honestly healing from high school and he's so afraid to fail in any... I mean, definitely he brought up having a girlfriend, but I think even in friendships, he's just like, "I'm going to stick with online, because the in-person thing just has not worked out for me," and he's lonely.
Gwen:
Of course he is.
Kristen:
Yeah.
Gwen:
I mean, Rylan has luckily found a few people through his interests, but I'll be honest, that was me forcing my hand. You had three kids you were trying to launch, I've had the capacity to be like, "All right, he needs people around Pokemon and D&D. This is the only way we're going to make friends." We coordinated that and we did it over and over until this group stuck, and that's his people now.
Kristen:
That's so great.
Gwen:
He has a few friends, but that's all he needs, so I think that's allowing him... He just said, "I just got to get through, I just got to get through high school," which is sad, but that's kind of what Em says, too.
Kristen:
Right. I mean, I think that's for a lot of kids.
Gwen:
Yeah.
Kristen:
But for our kids to be able to articulate it, Graham lacks that self-awareness. I don't know that he would say he had a bad time in high school, but I think also having his triplet siblings move on and do things that he hasn't been able to do has been pretty impactful. I will say, while I was gone overseas, Jameson came home with a friend and spent the weekend on their birthday and made dinner and played video games with Graham, because this friend likes the same video games as Graham, and they had a lovely time. All parties have said it was a really good time. That's never ever happened, and that just brought me so much joy I can hardly stand it, but it's only now that Jameson is able to handle helping Graham in that way.
Gwen:
Yeah. Well, but the fact that Graham was able to tolerate that and have two different people to have to adjust to is really big news for him.
Kristen:
It is huge. I wish I could have been a fly on the wall to see how long they hung out, but that's okay. I know that he hung out long enough to play video games with them, so it was probably at least an hour, and that's huge for him.
Gwen:
Yeah. He's got a sensory memory to how he experienced high school, and Rylan won't really talk about it either, but he apparently just knows enough that he stays quiet, and Em says that. She has a class with him and she's like, "He is quiet," and that is just shocking to us. Rylan would have to have post-its on his desk, and when he was done using his post-its, he wasn't allowed to speak anymore.
Kristen:
Yeah, Graham had the same, and unfortunately, that was true all the way through high school, because Hayden had a class with him senior year and he was like, "Oh, my God. It's a challenge for Graham to know when to speak and when not to speak." I think, on some level, Graham's aware. Whether he can articulate it or not is another thing, but all that to say, I think this young adult phase is way harder than I would've ever anticipated. I thought just getting out of high school, but here we are at 21 and it's still a challenge, and I think that's true for this generation. There's more interdependence in this generation than there have been in previous generations, and for those of us that are Gen X parents, we were raised basically feral, so we're just like, "What is happening?"
But for us, having neurodivergent kids, I think we've been primed to know that we're going to have to provide support a lot longer than we would've anticipated, but it's in ways that have surprised me emotionally and socially, and their awareness of just their differences and how they fit in the world and how they articulate it has been really fascinating as it evolves. Jameson has been doing phenomenal things, really doing well in college in this 3D animation, which is his jam, but it took him a couple of years to not be on the verge of a full-blown panic attack most days.
Gwen:
Yeah.
Kristen:
He just sent me a text showing me a midterm project in his modeling class. He's like, "I threw up three times in creating this, but it looks pretty good." Good days and bad days.
Gwen:
Good thing he is not dramatic.
Kristen:
Nope, good thing.
Gwen:
Nope.
Kristen:
Anyway, on that note, I think we should hand it off.
Gwen:
I think that's enough. We've given them a lot to research, make notes on. We'll try to link as much as we can and maybe we'll do a full separate download on more resources for this, because there's just a lot out there.
Kristen:
We'll have other people come on and talk to you more that know more than we do.
Gwen:
Yeah. All right, we're going to hand it over to our kids, guys.
Reagan:
We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real experts, their kids. Woo-hoo. We believe in nothing about us without us, so here it is. The last word.
Kristen:
Hey, Graham.
Graham:
Hello.
Kristen:
Today, Gwen and I talked a lot about adulting, being an autistic young adult, and I'm wondering what you think are some of the hardest parts about adulting for you.
Graham:
I would say one of the hardest things about being an adult, in my opinion, is, hypothetically, if you're a teenager, the graph is so medium-low, but then when you become an adult, it immediately then spikes upward in terms of expectations. It feels like whiplash.
Kristen:
What do you think some of those expectations are that feel so overwhelming?
Graham:
I would say finishing your college classes within a certain amount of time, so you don't start falling behind.
Kristen:
Managing your schedule?
Graham:
Yeah, schedule managing is a good way to put it.
Kristen:
Okay. What else do you think is hard, socially or emotionally or family?
Graham:
Social-wise, I'd say maybe finding peers that are around your level in terms of age, I guess, because sometimes it feels like you're going to be a little weird, so being around the teenagers when you're an adult.
Kristen:
Right.
Graham:
Interacting with other adults can seem a lot more overwhelming.
Kristen:
Where do you find them?
Graham:
I have no idea. If you're physically finding them, I find it hard to find. What community do you go to? Well, online, you just find a chat room and you're golden.
Kristen:
I hear you saying that. That's your go-to, being online, you can find the adults that you want to...
Graham:
Exactly. Being online, it feels like a cheat sheet, in my opinion, of finding a group that you work with. Well, being in person, it's like you have a massive handicap.
Kristen:
Yeah.
Graham:
Hypothetical handicap.
Kristen:
A hypothetical handicap.
Graham:
Right. For me, if you're just on a bike, it's going to be hard to drive to places. If you want to go to the bar with the boys, it could be a lot more restrictive if you don't have your driver's license.
Kristen:
Right, and if you don't have boys to go to the bar with.
Graham:
That's just a hypothetical question, but yes.
Kristen:
It sounds like the online friendships have added a lot to your life.
Graham:
Exactly.
Kristen:
What have they added, do you think? What are you able to get from those peers online?
Graham:
I find more people all over the place that have some things they can relate to, so I don't feel like the only one on the planet that has these interests or has these quirks. Feels more connected.
Kristen:
Yeah. Do I hear you saying then you don't feel alone all the time?
Graham:
Exactly.
Kristen:
Even though I, as your mom, might look at you and be like, "He has no friends, I'm so worried, he's alone," but you don't feel alone, because you have a whole world online.
Graham:
Yeah. I have a whole lot of online friends and, even though I can't interact with physically, it feels like we have some bond in some way that you don't see visually.
Kristen:
Are you able to talk about your hopes or your fears or what's bothering you, or is it only about your special interest?
Graham:
It depends, because say if you having a lot of sensitive people, then sometimes it's not a great idea to also talk about stuff to make them feel bad, but if it's a group that you relate to, then I don't see a problem with sharing your hopes and fears.
Kristen:
Have you been able to do that ever?
Graham:
Yeah. I found a friend there, too, that... For example, they feel like they're not doing well. I say, "I can relate to you, dude. You are not alone," and it just makes them both feel good.
Kristen:
Yeah, that's really great. Thanks for sharing.
Graham:
No problem, thank you for having me on.
Gwen:
All right. We have Rylan here for the last word. How you doing, bud?
Rylan:
Good.
Gwen:
Today, Kristen and I talked about transitioning to adulthood, which feels very timely since you are quite literally doing that right now. I'm going to just open it up to you to talk about whatever you think you would want listeners to know about your experience transitioning to adulthood.
Rylan:
I guess changing in hygiene. Autism, Tourette syndrome not taking so much of a hold, being more mature, not being in people's faces.
Gwen:
Not being in people's faces? Talk more about that.
Rylan:
Not constantly talking or being annoying.
Gwen:
Do you think that you were annoying and constantly talking when you were younger?
Rylan:
Yeah.
Gwen:
You do?
Rylan:
Maybe, but high school changed that, I guess.
Gwen:
Yeah, we did talk about how puberty changes a lot of us. We grow up and evolve. What are some things that we're doing right now to get ready for adulthood?
Rylan:
Writing my college essay, getting a bunch of loans or grants.
Gwen:
Well, hopefully both.
Rylan:
Grants, loans, scholarships.
Gwen:
There you go.
Rylan:
Yeah, that could be a lot of work.
Gwen:
We were just writing that essay, weren't we?
Rylan:
It's really big.
Gwen:
Well, you've done a lot of things that are worth noting, right? For people considering giving money.
Rylan:
Yeah.
Gwen:
Can you highlight some of the things we talked about? What are the categories we talked about in the essay?
Rylan:
Advocacy, leadership, and hard work.
Gwen:
Yeah, and you had a lot of things that fit under those categories, didn't you?
Rylan:
Like going to the zoo to volunteer, working at my current job, which I don't know if mom has talked on the show about.
Gwen:
I have. Two years there, right?
Rylan:
Almost, almost. November 2nd is when-
Gwen:
Really? Yeah, you're good with dates. Is there anything that has been really fun about transitioning to adulthood?
Rylan:
I can do more, stay up late at night, watch better shows, I guess. I don't know.
Gwen:
That's good, and maybe go to college.
Rylan:
Yeah.
Gwen:
We should know this week, right?
Rylan:
I'm scared.
Gwen:
Yeah, me too.
Rylan:
Hope we get in.
Gwen:
Is there anything you want to share with maybe younger parents whose kids aren't in this phase yet?
Rylan:
Make sure they look really hard at the colleges and put some prompts into try to find a perfect college. That's how I found my college. Am I allowed to say?
Gwen:
Yeah.
Rylan:
Beacon.
Gwen:
Yeah. You found it on your own, didn't you?
Rylan:
Yeah. Moral of the story, let them find their own colleges.
Gwen:
Yeah.
Rylan:
Yeah.
Gwen:
That's a good tip. All right, this has been Rylan on the last word. Thanks, bud.
Rylan:
Welcome.
Gwen:
Thanks for joining us for this episode of You Don't Want a Hug... Right? We'd sure appreciate it if you'd subscribe to our show in your favorite podcast app, and if you want to win listener of the month, you can rate and review the show, preferably with five stars.
Kristen:
If you'd like to stay up on all our happenings, resources, and bonus material, join our newsletter at youdontwantahug.com.
Gwen:
Remember, even the best caretakers make panic rooms out of their closets. No judgment here, friends, so shoulders back, double chins up. We are all in this together.
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