Speaker A: Welcome to the Autism and Neurodiversity podcast.
Speaker B: We’re here to bring you helpful information from leading experts and give you effective tools and support. I’m Jason Grygla, a licensed counselor and founder of Techie for Life, a specialized mentoring program for neurodiverse young adults.
Speaker A: And I’m Debbie Grygla, a certified life coach. And maybe most importantly, we’re also parents, parents to our own atypical Young Adults.
Speaker B: Hello and welcome to the Autism and Neurodiversity podcast. I’m Jason Grygla and I’m going to be your host today. Today we’re going to be talking about a little bit of a heavy subject, a serious subject and an important subject. It’s a fairly sophisticated thing when we talk about the extremes of anything. And today we’re going to talk about the extreme where autism or neurodivergent developmental disabilities, not just neurodevergency, but when it becomes a disability, is connected with and is added to severe mental health issues.
And there’s a small population, a small percentage of the population, where mental illness like depression, anxiety, bipolar, schizophrenia, any of those become so extreme that they are completely inundating and created a situation where the person struggling with that disorder is, for lack of a better term, paralyzed in life, stuck. And there’s not much that can affect, influence or change it.
Now, I think our discussion about the subject which is called seriously mentally ill when something becomes so serious it’s hard to do anything with it. Our discussion about it has become so sensitive that many people, I think, believe they have more extreme issues than they do. We use the word diction way too often, but cavalier is the right word and we use the word depressed and severely depressed way too much when really depression is probably more accurate.
And a lot of people, I think, believe they have serious mental illness when they can’t just medicate or fix a problem quickly. So just know that when I’m talking about serious mental illness or SMI that it’s when someone becomes so dysfunctional in their situation that there’s very little that can change or affect the outcome of their quality of life. So we’ve talked before about how autism magnifies any type of disorders. For example, paranoia and autism together and magnify into severe paranoia and move into schizophrenia. Or if someone has a predisposition to OCD and they’re on the spectrum, then they’re more likely to have their OCD crystallize into a problem or an issue.
And we’ve talked about there’s reasons for that that if someone’s more likely to have an anger issue they might have a bigger anger issue than someone without autism. And it just goes across that someone who struggles with autism has typically less understanding of insight, nuance, social interaction. They’re already more stressed, they’re already more pushed to their limits and they’re emotionally drained quicker, not because they have less although sometimes I think resilience is a problem but I think a lot of that is because they spend too much of their emotional mental resources too quickly and they run out.
So in the end, when someone has autism and a predisposition to any other type of problem, even if it’s a physiological problem like diabetes, because of developmental delays, disabilities, immaturity, or whatever, those problems tend to be heightened, magnified and get worse. And one of the problems is it’s like one plus one. Three, if you get somebody with the likelihood of maybe any other disorders together, let’s say diabetes and OCD, they can mix and become worse than either one by itself, obviously, but it’s harder with autism.
Our ability to lift ourselves up by our own bootstraps is a part of the equation to changing our lifestyles. Being able to change ourselves internally is one of the three areas that we can actually have effect on to change the equation for someone struggling with a disability or a disorder and who needs help. And those three areas are one first, that we talked about changing ourselves, having insight, changing our mindset, learning how to feel and to think and to choose from within, lifting ourselves up by our own bootstraps, as it were. And that’s where counseling comes in, mentoring comes in. That’s where maturity and development comes in for the individual.
The second one we can affect is chemicals in our body. From an outside standpoint, we can do legal or illegal. Marijuana in some states is legal. In some states it’s illegal. A lot of people say marijuana helps greatly with their anxiety and stress when it comes to autism. Marijuana is known to cause severe paranoia and bring on other disorders like schizophrenia and more OCD paranoia. So that’s one area where the chemicals that we can take into our bodies will fix us. And then there’s the prescription drugs that are helpful or unhelpful. Just because they’re legal doesn’t mean they’re always healthy or safe or the right medication at the right time. So there’s the chemical aspect.
And the third one is changing the environment, reducing the stress of someone who’s trying to adult and isn’t ready to adult, reducing the expectations, reducing the noise, both socially, physically, light, actual audio noise or whatever it is. And we’ve talked about how important it is to be developmentally aware of where someone is at and what they’re prepared to handle so that we don’t push them out of their comfort zone and into crises. So with changing ourselves, medications and changing the environment with a combination of those three interventions, most things are easily handled.
There is a small subset of our populations, especially with autism and neurodiversity, who are higher at risk and more likely to have severe mental illness along with their autism. And some of those include schizophrenia, bipolar, severe OCD, severe depression to the point of I think we’ve also talked about maybe not, but there’s a category in personality disorders where they have depressive personality disorder where it’s an obsessive compulsive, can’t change my image, my identity, my personality type, from just being the depressive person. And I think that’s also magnified with autism.
Whatever someone is struggling with, if they have autism and they’re trying to overcome disabilities or other weaknesses that are genetic or environmental in their foundation, it doesn’t really matter if someone was abused or they have a predisposition to addiction or whatever it is. If you have autism, it’s so much harder to have the wherewithal to manage the resources around you and to manage the resources inside of you.
Once in a while it comes down to the situation where we have literally done everything that we can to help the person inside change their environment and manage their meds. And they are still really dysfunctional, miserable, acting out, destructive, maybe suicidal. And there doesn’t seem to be much left we can do. Those are the situations that keep me up at night. Those are the clients or the people that I lose sleep over because I can’t help. And it doesn’t seem like anything anyone does can help. So it’s hard.
I want to read the definition of seriously mentally ill. They are disorders that affect a person’s thinking, mood and or behavior and they can range from mild to severe. About one in five adults lives with a mental illness. But seriously mental mentally ill people goes from 20% down to about 5%. And I still think that number is a little high because I read some statistics and it talks about how seriously mentally ill people can still live happy productive lives. And I’m thinking, well then they’re not really seriously mentally ill. Maybe that’s just a typical mental health disorder that was really bad. But if they’re able to live a productive, happy life then I’m not sure that is seriously mentally ill.
I think it’s a mental disability and good for them for getting out of the category of seriously mentally ill. But it seems to me that seriously mentally ill means that the dysfunction is nearly impossible to overcome. And maybe the best we can do is mitigate it to some extent or try to manage it so that they don’t die for themselves, become homeless and be killed on the streets. Die from an addiction, die from not eating well or overeating on drugs.
Further, for the definition mental illness that interferes with a person’s life and ability to function and not just have distress but literal functioning is depleted gives you the definition of seriously mentally ill. I’ve already mentioned some of the main ones bipolar, major depressive disorder, schizophrenia. But there are also other ones as well. And there’s a high correlation between a developmental disorder or autism and seriously mentally ill.
However, there is a subset of autists that are needing higher support. Some have called them lower functioning. We don’t use that word as much anymore because there’s no way to determine higher and lower functioning autism, but just those who need higher and lower supports within the autism spectrum.
So someone who is so autistic that they are a little bit oblivious, naive childlike and aren’t even comprehending the pressures of the world. They’re kind of protected from the severe depression and anxiety that can come from internal thoughts and beliefs and external pressures. And so really I’m talking about autists or neurovirgeants who are savvy enough to get it, savvy enough to have expectations, savvy enough to dream and wish and to hope and to compare themselves to others. So someone who is savvy enough to understand that something really bad happened, a major catastrophe where people died and then they start to obsess about all the deaths and the pain and the tragedy and then they think that could be them. And that requires a little bit of external focus and awareness.
Some of the things that are listed as ways to manage and or treat seriously mentally ill diagnoses are and listen to these because for autists it makes it really depressing. Some strategies include having a good treatment plan and sticking to it. Even if you feel better, don’t stop going to therapy, taking medication, don’t stop working on the things that are working. And that requires maturity and insight. And someone with autism is more likely to say, I feel better. I can quit doing all the things that were holding me up. And then they just fall back down into the mud or the water and start drowning again. So having a really good relationship with your medication provider and communicating well with them, well, that’s not going to happen unless someone is managing that case for them. And the loved one that we’re trying to support and mentor allows us to continue to support and mentor the next one.
Learn about the disorder. I think this could happen. It requires enough maturity to say I want to understand why I’m feeling what I’m feeling. That’s a pretty developmentally mature stance to take on our situation, to ask for insight. And the younger or more immature or the more autistic someone is, the less they’re going to be willing to look at their disorder and learn about it. Practicing self care, well, that’s great. And that’s what we’ve been trying to teach our loved ones since they were born. And it takes way longer, way more practice and some things they just never are going to get.
Reach out to family and friends. It’s another suggestion for reading SMI that requires relationship and attachments and social nuance and give and take. And that’s just not one of the strengths of someone who is typically diagnosed and is typical with autism. So once we’ve done everything we can environmentally with medications, with helping the person change themselves in their thinking and their thoughts, working on their self care team, their life skills once we’ve looked at all of their meds and still nothing worked, I don’t know what’s left. Except for sitting there with the person and rocking them, holding them and making sure they don’t go off the deep end.
And I don’t know anyone that can be the constant, ongoing emotional regulator for their loved one. And in some ways, it is very much like we are scuba diving with our loved one and they don’t have a regulator or a mouthpiece to breathe into, and they’re using our extra buddy one, which everyone has. If they’re a scuba diver, we’re breathing with them, they’re breathing our air. But as soon as we take away their extra or extra or we run out of air, they don’t have any self sustaining way to manage their situation. And then it turns into crises.
Homelessness, suicide, mental health issues. Schizophrenia becomes off the charts. A lot of times what happens is they become homeless. And a lot of times what happens is they get into the court system because they do something illegal, violent or dangerous to themselves or others. Sometimes that is the best course of action because there’s nothing else the family can do.
They’ve lost all influence. They’ve lost the ability to mentor. Their loved one no longer allows them to help manage their medications. So they stop going on, they stop taking their meds. Their loved one starts to interact more and more with people who are unhealthy and don’t have their best interest at heart. And because they’re able to choose their own choices, whether they’re teenagers or adults, it doesn’t really matter. We lose our ability to control their environment more and more. And if they go off their meds and they’re more likely to crash or going to crises and they’re less likely to be able to control their internal abilities to crash, they end up in hospitals, and then you get this yoyo effect going on where they’re in and out of hospitals.
For mental health issues, really the problem underlying disability is their inability to have emotional regulation, insight, self care, maturity, all of the things that make high support need. Autism a really hard thing to live with. But if a court gets involved, a judge can order probation officer, a judge can threaten jail time, a judge can order them to take their medications and to meet with their therapist and their psychiatrist as prescribed. And sometimes that works.
I’m thinking at this point, hardest thing for me is to watch my loved one make all of their own destructive decisions and not be able to do anything about it. I’ve done everything I can to create a relationship where they allow me to influence and it’s gone. I’ve done everything I can to protect them from themselves and others and it’s gone.
We worked for years on helping them stay supported with extra help of medication, and it’s gone. And they really are just spiraling down at that point. A lot of parents have to make the decision, do I at least try to give them a home to live in? And they try to let them live in our home with our marriage or as us as a single as a single person. It’s probably quite a bit easier because our loved one who has serious mental illness and autism or neurodevelopmental disability, they’re not going to hurt anyone but me and I can protect that.
But if I’m married, it can really cause problems in the marriage. And if I have children, absolutely can be destructive to the children. I haven’t been willing to allow anyone to come into my home where I have minor children still in my home if they’re going to be in any way damaging or destructive to them, because they’re my priority and they’re still underage and developing, and I still have the ability to control a lot of what they do in their life. And I’m not willing to let someone who’s a destructive force to come in and destroy something that is actually destroyable.
Now, me and myself, I can take a lot of hits without being destroyed. This is the other hard thing. Another hard thing for parents is how much can I take hits without it actually causing me damage? Suffering, yes. Damage, no. There’s a big difference. Suffering isn’t damage. Suffering means it’s hard. I think too much suffering without enough laughter and love can be destructive and damaging.
So we have to figure out what that looks like and where that balance is. But do I pay for an apartment even though I know that they’re going to trash the apartment or they’re going to have other homeless people join them or other destructive people come in and affect them and I won’t be able to see it all and influence it? And I have to decide, is it better than letting them be homeless? What if I provide an apartment but they won’t use it because they’re proud and they want to do it on their own and they’d rather sleep in their claire and take advantage of an apartment that I provide? If I provide more than an apartment, if I provide food, am I enabling them, the destructive force in my life or enabling them to take advantage of something to the point where there’s a serious mental illness?
I think food and shelter is a regular charitable, empathetic thing to do. Tough love has nothing to do with being cold and callous. It has to do with giving them what they need, not what they want. And food and shelter is one of those. I think every loved one is different. They might need a place to live, but they can always fend for themselves with food and nobody’s going to go hungry and maybe that’s okay.
I know in one case they needed a place to live. The parents decided to not give them money for food because they kept using it for drugs. In another case, they wanted to not give them money for food because at least their child would go out and visit the food entries and reach out to friends for food and it gave them an opportunity to be social instead of sitting in their apartment all day getting more depressed and more suicidal.
And so it’s weird, right? How does giving them money for food keep them from being suicidal? Well, in that case, that was one of the reasons, and it was valid and they looked at it. So to the parents who are struggling with children who are not just hard behaviorally, because that’s its own issue and I haven’t discussed that today. If they’re just angry, mean, selfish, acting children, even if it’s for good reason, and oftentimes it’s not, they’re just brats with autism, for lack of a better way to describe it. Those are different situations. Those require behavioral interventions with the right boundaries and tough love and supports from the people around them.
But if you have a severe mental illness and there’s nothing left you can do, I’m not sure what to tell you except for keep yourself on stable ground. Don’t let your love go and drag you into the abyss with them. That’s not what they need and it’s not helpful. Keep offering once in a while, maybe every three to six months, hey, if there’s something you need, you want to go get lunch and at least take them to lunch once a month, once a week is fine. Whatever you need to do there to keep a relationship of influence, if it’s possible. It seems like some loved ones in severe situations, every interaction you have makes things worse. And if you are such a trigger to them, even if you did everything right, but their anger and twisted thinking about you is so negative of a trigger to your loved one, then you can’t even do that. All you can do is back off and hope for the best.
And in those situations, as a Christian, I turn it back to God and say, god, I’ve done everything I can and I need a miracle, and I pray that you protect my loved one. And I’ve been in that situation and it’s really hard. So there are people who understand, not many. There are a few people who understand that situation. Oftentimes we can find support groups, online, groups that you can go for to tell your story or hear their stories and communities with people who get it.
And I think my next podcast I’m going to do is going to be about catharsis and how critical it is for those who are in pain. And that includes us, but also our loved ones who are autistic or neurovirgin. Thanks for joining me today. And I really hope you don’t have to experience such a severe mainstream case as SMI with autism because it’s hard. There’s not a lot of easy answers or answers at all, but keep working on them.
I’ve always experienced that God is aware of his children, especially the ones who’ve been given such a bad rap that they end up with something so severe and hard to manage. So good luck and we’ll talk to you soon. Thanks.
Speaker A: Thank you for joining us on this episode of Autism and Neurodiversity with Jason and Debbie. If you want to learn more about our work, come visit us at JasonDebbie.com that’s JasonDebbie.com.
