Autism Sleep Crisis: Dr. Muzammil Shafi on Behavior, Meds & Reality

Sleep challenges in autism aren’t just difficult, they can be life-altering.

In Part 2 of this Autism Labs conversation, Dr. Muzammil Shafi, a neuroradiologist and father of a profoundly autistic son, shares the real-world impact of severe sleep disruption on behavior, caregiving, and overall quality of life.

From melatonin and pharmacological interventions to the emotional toll of chronic sleep deprivation, this episode explores how families navigate one of the most common and least understood challenges in autism.

The conversation also highlights the transition into adulthood, including gaps in services, long waiver waitlists and the financial realities many families face.

Key topics include:

• Autism sleep disorders and melatonin pathways
• Behavior changes linked to sleep deprivation
• Medication vs quality of life decisions
• Caregiver burnout and sustainability
• Adult autism services and system gaps
• Building community and support networks

This episode is essential listening for parents, caregivers and professionals supporting individuals with profound autism.

If you’re in this journey, you’re not alone.

👉 Learn more about Dr. Shafi’s nonprofit (Dar-us-Sakina):
https://www.dushouston.org/

This program pairs autistic teens & adults with a friend and offers real community support.

⚠️ Haven’t watched Part 1 yet? Start here first:
https://youtu.be/xlHc947wU0k?si=S3G65aTF5RCj6z4g

Part 1 gives the full backstory and context that makes this episode hit even harder.

Transcript

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Mike Carr (00:05):

Welcome back everyone. Those of you that missed last week, we started a conversation with a medical doctor who's a neuroradiologist and also the dad of a profoundly autistic 18-year-old son who lives in Houston, Texas. And so we're going to continue that conversation in part two today. But if you miss part one, please take a look at what we did last week and then come back and join us and see part two. Here comes part two with Dr. Shafi. Have you done anything? Have you had any problems with sleep or how lack of physical activity might influence your son? Or are there any other things outside of nutrition that you guys have personally experienced that you say, "Hey, this is part of our now standard protocol. And if we follow this, we seem to get better consistency in behavior day after day."

Dr. Muzammil Shafi (00:48):

Sleep is one of the hugest problems with autistic children in general and autistic adults. They did the initial research that autistic individuals have a completely different pathway of making melatonin. Sometimes they do not make it at all, which is obviously, as we know, a hormone that regulates sleep and the circadian rhythm. And that was one of the earliest interventions. If you talk about medicine in autism, one of the earliest interventions was, "Hey, give the melatonin to sleep."

Mike Carr (01:19):

For

Dr. Muzammil Shafi (01:20):

My son, it was a life changer for him because he couldn't sleep and then he did. And then he started giving it to him at age six or seven or something, very early because otherwise he would literally not go to sleep. And that's continued to this day. And it's always a combination of pharmacological interventions to get him to sleep as well as just the same routine to go up to sleep that gets him to sleep. It's a journey because I think a lot of people on this journey will also resonate with this that some things will work at a certain age and they don't work at a different time and you have to change your technique and it's a struggle. Just a couple of months ago, and this still happens, is that he goes to sleep on time and he'll wake up in the middle of the night which never happened before.

(02:08):

And

Mike Carr (02:09):

When

Dr. Muzammil Shafi (02:09):

You have an adult kid up, waking up in the middle of the night that wants to go downstairs, wants to play on his iPad, wants to go in the car at 3:30 in the morning, it's tricky. Say with me, I have to wake up at six and work the next day.

Mike Carr (02:27):

That

Dr. Muzammil Shafi (02:27):

Continues to be a struggle and we talk to sleep medicine and different doctors with our own knowledge to figure out what's best and different medicines and things like that.

Mike Carr (02:39):

And that's an interesting question, Muz, is that where do you draw the line on pharmaceutical, pharmacological intervention? Because most parents don't want to overmedicate their kids, but we were the country when we were looking for residents for our son. And you see some places where they're drugged up because they have bad behavior and you never want to see anyone overmedicated to impact behavior. But if they're not getting enough sleep, maybe there is a line that you've drawn in the sand where you say, "Hey, if we go so many days and we're not getting enough sleep, that impacts our quality of life, that impacts our son's quality of life. And that's when we give him a mild sedative or something." I mean, what is the protocol that you guys have sort of honed for yourself? As

Dr. Muzammil Shafi (03:20):

A full disclaimer, it's not medical advice per se, and this is purely just the experience of us. And my wife is a doctor, she's a pathologist, board certified pathologist. And for us, we have two other kids that are neurotypical and we want them to have as normal a life too as possible within the realm of reason. And so also with my son, we know that, okay, he may not be able to regulate himself, but he's going to feel better when he has sleep. Oh

Mike Carr (03:52):

Yeah.

Dr. Muzammil Shafi (03:53):

It's like us knowing what's best for him. It's like, okay, we're his parents. We know what's best for him. It's like, well, I don't want to go to sleep. You have to because it's good. Something like that. So we have a very low threshold for pharmacology on him because he will literally not sleep. He will not sleep. He will sleep two, three hours sometimes.

Mike Carr (04:14):

Oh my gosh.

Dr. Muzammil Shafi (04:14):

Wake up. And

(04:16):

Without that, without pharmacology, he won't be able to sleep. And then it leads to very, very poor outcomes the next day and the days after. We view that as that. And then the second thing is that very important for all parents to remember this, those who are more senior to me and those who are younger than me, that if you don't take care of yourself, you can't take care of your child. And so part of that is that we have to be able to rest and have enough sleep so that we feel mentally and physically able to take care of whatever challenges may lie the next day.

Mike Carr (04:53):

I get a really important point. And I think there's a certain degree of guilt that we've run into ourselves and with other parents, especially moms, that they want to do everything they can to help their son or daughter who's autistic. And they bear a superhuman burden day after day, whether it's taking them to school, taking them to the doctors, taking them to therapists, all this stuff. And if they have problems with toileting or self-hygiene, all that kind of stuff, and it really is a grind. And so being sure that you can have a quality of life for yourself and get out and go on date nights and find respite care and do some things that you deserve and not feel guilty about it is so important. We have found some resources and we've created some resources in Austin, so we're able to do that. But I'm interested in Houston and just your journey, Muz, because it's not easy.

(05:45):

It's not easy to find folks that you trust, especially when you have a profoundly autistic son or daughter that maybe is nonverbal, has limited verbal, and they can't really tell you what goes on when you come back after going out for a night or over a weekend. What have you guys found or done to solve that problem for yourselves, if any? A couple

Dr. Muzammil Shafi (06:02):

Of things, and this gets into some of the government assisted assistance programs that are out there, like the waivers and stuff. And so he's 18 and so he did not meet criteria for whatever reason for different waivers, even though people came to the house, they did assessments and they're like, well, he doesn't meet criteria, but he will in the future. He's on that wait list for the other waivers that we talked about. And once he reaches a certain age, I think it's 21, I believe, that he will meet criteria for those, but he's kind of in that gray zone of not meeting some of the waiver eligibility criteria. And I'll say this openly, I'm blessed. I have a good career and something that I love with a passion to do, but also that allows me the financial means to take care of him without worry.

(06:55):

And I say this because I want to recognize how fortunate we are, that's there. And there are parents just like us that don't have that. And I always think about them because then it comes back to on a society level, how do we help these kids, period, regardless of

(07:20):

Individual ability, wealth or whatnot. For us, as we know, Texas, maybe it'll get better one day, God willing, but it's not the best state in terms of services for our level of kids at all compared to some of the other states that are out there, the Northeast or California, Colorado, I've heard nowadays. And so it's really just private funding for us finding. Houston is humongous, right? It's huge and you can find great speech path, OT, whatever, but most of it tends to be insurance pays for a little bit, constantly bother you about eligibility, especially past a certain age. Or you just pay out of pocket. And then the same thing with caregivers and respite programs, it tends to be mostly out of pocket here that you pay somebody, you find people like behavioral therapists or ABA people that are familiar and you pay them a good amount of money per hour to provide respite care.

Mike Carr (08:26):

And this is a challenge with waiver dollars. So for any parents that's listening, I've talked about this a lot on different podcasts, get on the waiver list in Texas. The wait list is over 15 years for HCS in class, and those are the two that are going to offer you the greatest level of support. And what Muz is talking about is when you age out of the school system at 21, 22 in Texas, it's like falling off a cliff. You have all those supports in place. The school's supposed to take care of your kids and they'll bring in the therapist that's needed. You'll have to be an advocate. Not all schools are going to offer up everything that they're obligated to offer, but if you ask, they can't really say no, although they might. So take advantage of that, right? Take advantage of everything in your school.

(09:02):

But boy, when they turn 21, 22, that's when those waiver dollars and everything else are just going to become so important. Muz, but we've talked about different things. Is there anything else though that you would like to give as advice to parents who have profoundly autistic sons or daughters, maybe 18, 19, maybe a little bit older, a little bit younger, that you wish someone had told you? Or is there anything that you've heard in your journey that you thought was just the worst possible advice? And if you ever hear that from anybody, especially a medical professional, ignore it. I mean, anything on the pro side or the con side?

Dr. Muzammil Shafi (09:33):

On the pro side, first of all, I wanted to give a shout out to you because your website, I wish more people knew about it. I really do because it's amazing. I mean, Autism Labs, if you just look at it, to have all of those resources right there is amazing. Thank you. And

Mike Carr (09:51):

I

Dr. Muzammil Shafi (09:51):

Think that it really helps parents and I wish that, I mean, with your permission, I will send that out to my network organically. And I think the biggest challenge for us is that we are lumped under this umbrella term of autism. And our children, and this takes away nothing from the challenges of kids who are higher function, are level one. I'm not saying anything about that, because my child was that at one point, but we are almost like a completely different diagnosis. Yet from a insurance standpoint, from a medical standpoint, from all of those reimbursement standpoints for waivers and things like that, we are under the umbrella of autism. So you have a kid that is maybe on the Asperger side of the spectrum where they're completely verbal, they're communicating, they're interacting, they go to school, they might have some social awkwardness or issues and they're autistic.

(10:58):

They're in the same boat as my son who is nonverbal, that has behavioral issues, that needs twenty four seven constant supervision.

(11:07):

And that to me is a big travesty. I think that if we in some way can separate our children from that umbrella as a separate diagnosis, it will go a long way towards targeting research towards our end of the spectrum, targeting dollars towards our end of the spectrum. It's kind of similar to in anything else in medicine, which when insurance companies look at disease, well, somebody that has a brain tumor versus they have a headache, both are neurological conditions, but they're on opposite ends of the spectrum and they have completely different types of dollars, if you will, allocated to them. And so that is what these places like the National Society of NCAS, I believe, National Council of Severe Autism, NCSA. Yes,

Mike Carr (12:00):

NCSA.

Dr. Muzammil Shafi (12:01):

They're trying to do work on that end. They're very nice people. I'm part of them, just parents like us, just attempting to make a database, attempting to see resources that are out there for our kids. That's my advice is band together, like what you've been trying to do, like we've been trying to do, like NCSA is trying to do because our needs are very different than other people on the different end of the spectrum.

Mike Carr (12:29):

Agreed.

Dr. Muzammil Shafi (12:30):

And

Mike Carr (12:30):

Besides the NCSA, and that stands for the National Council for Severe Autism, and we'll put the link in the show notes and then there's another one called the Profound Autism Alliance. And so there's been this discussion about, well, do you call it severe autism? Do you call it level three autism? Do you call it profound autism? Regardless of the label, it is a very different type of diagnosis and a much more problematic diagnosis as parents of profoundly autistic kiddos know because it does require one-on-one care, at least from the time they wake up to the time they go to bed. And in some cases, you need to have somebody with them at night. We have a camera in Michael's bedroom. We have audio sensors, so he gets up in the middle of the night, the Ring camera goes off. I mean, it's just- Just

Dr. Muzammil Shafi (13:10):

Like me.

Mike Carr (13:11):

Yep. Yeah.

Dr. Muzammil Shafi (13:12):

To

Mike Carr (13:12):

Conclude, I would like, I did not give you an opportunity to talk about what your wife's doing in terms of your nonprofit in Houston. And I'd like to give you just a couple minutes to talk a little bit about what you're doing there and if someone would like to find more information, if they're in the Houston area, how to get in contact with that nonprofit. I think what you're doing is pretty cool. So if you would share that with everybody.

Dr. Muzammil Shafi (13:32):

Yeah. My wife is board certified pathologist, but when he had his diagnosis, she really pivoted and wanted to do something that would benefit my son. It's altruistic motives, but also a motive to benefit my son. And so she made a nonprofit that's in Arabic, it's called Dar-us-Sakina. And what that means is House of Tranquility. And it's for autistic children of all backgrounds, all race, all faith, whatever, like anything else in the US for autistic children here in Houston where they teach them other faith-based things. But really their focus now is on activities of daily living, pairing them with a friend so that they have a friend at least once a week. And that was one of the basic goals that they had is that once a week they can have some social interaction. And my son, and this resonates with a lot of parents, my son does not have friends, but he wants friends.

(14:30):

And I see his face light up when there's kids his age that are interacting with him. And we all have seen that. And so for many years, had a friend there that would come and they're volunteers. This is a volunteer based program and they would come one-to-one ratio. They would hang out with the kids and every type of kid with any disability was accepted. There was nobody that was turned away. That was very important for my wife and the board members, which I am a part of too, to have that we are not going to turn away kids because of any medical or social condition. We'll figure it out. And just to have a friend to interact with. And it could be as simple as them just sitting and playing, painting together for whatever time they're able to stay. It's usually a two hour program on Sunday.

(15:14):

And then this has expanded to a adult and teen day program where they're able to purchase a building, a warehouse here in Houston and create a program that's five days a week to have people come that are past that age where they have school to have some place to go to and some place to do and things like that.

Mike Carr (15:38):

That social interaction, that friend, to us has been magical for our son who's now, he's 36, so he's a lot older than Ismael, but this idea that, and you see them come alive. He'll have a buddy or two that are also on the spectrum, maybe they're functioning, maybe not, and they'll rib one another and they'll smile at one another. And they develop almost a big brother, little brother or a sibling kind of relationship. And they come alive in very human and natural ways that maybe you've never seen before because as you said, a lot of autistic guys and gals don't have any friends and they do want friends. And you'd be surprised, at least we've been surprised, at how in the right setting, that is such an important part of their life, whether it's once a week like you guys do on Sundays or if it's every day, if you move to that kind of a thing five days a week, it's a big deal.

(16:27):

So Muz, tell us one more time the name of that and if you could spell it and we will also put in the show notes the URL for that nonprofit so that anybody wants to find out more about what you guys are doing,

(16:39):

They could do that.

Dr. Muzammil Shafi (16:40):

Dar-us-Sakina. It's D-A-R-U-S S-A-K-I-N-A. It's an Arabic term and it's a house of tranquility.

Mike Carr (16:47):

And is that just. Org? Is that how they would - Yep.

Dr. Muzammil Shafi (16:50):

It's a 501 registered charity. It's been around for about 15 years now here in Houston.

Mike Carr (16:56):

Wow. In closing, is there anything else you'd like to leave parents with or say?

Dr. Muzammil Shafi (17:00):

No, I think we're all on this journey together. I think that major thing is take care of yourself. That's my best advice. I'm on this journey with you. I struggle as much as you guys do at different times. And we're all brothers and sisters on this journey regardless of our background, our ethnicity, our faith, our religion, our lack of, or whatever. We are all in this together and we all need to help each other out.

Mike Carr (17:25):

And Muz, I think that's a great way to end because both you and your wife are MDs are trained medical doctors. You have a skillset and an academic background that most of us don't, yet you are wrestling with exactly the same problems that the rest of us are wrestling with. So at the end of the day, we're all moms and dads and we all have to deal with it the best way we can. So thank you so much for sharing your words of wisdom today. And for anyone watching, please go to the show notes for more information on Muz and his wife's nonprofit. And please come back next week for another episode of Autism Labs.

Dr. Muzammil Shafi (17:59):

Great. Thank you.