May 17, 2025 • 26 mins
A mother and clinical social worker shares her heartbreaking journey navigating the legal system after her high-achieving son developed serious mental illness, revealing how our justice system criminalizes rather than treats mental health conditions.
• Licensed independent clinical social worker with 40+ years experience working with vulnerable populations
• Her academically successful son began experiencing internal racing thoughts and anxiety despite outward success
• Despite parents' professional backgrounds (mother a social worker, father a psychologist), they faced enormous challenges getting appropriate care
• Son discontinued medication at 29, leading to psychotic episodes and repeated negative police encounters
• Law enforcement and legal system demonstrated lack of training and empathy in handling mental health crises
• Massachusetts lacks assisted outpatient treatment programs that could have prevented criminalization
• 70-80% of incarcerated individuals suffer from serious mental illness
• Anosognosia: neurological condition where individuals lose ability to self-reflect on their behaviors
• Advocate working with National Shattering Silence Coalition to change legislation and improve mental health services
• Need for systemic change in how police, courts, and society respond to mental health conditions
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to why Not Me ?
The World Podcast, hosted byTony Maitour, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:28):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantor.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is StephanieBylin, a licensed independent
clinical social worker with over40 years of experience,
including 32 years in a publichigh school, where she
coordinated services forstudents with social, emotional
(01:13):
and neurological challenges,creating collaborative teams to
support teachers and staff inmeeting the needs of this
integrated, vulnerablepopulation.
She's also here to sharevaluable information about her
son, who came to her with racingthoughts and having difficulty
processing informationinternally.
This experience led to hernavigating the legal system and
(01:37):
now she shares her insights onwhat happened and her efforts to
support her son.
It's a pleasure to have herhere.
Thanks for coming on.
Speaker 2 (01:46):
Thank you so much.
Speaker 1 (01:47):
The pleasure is all mine If you would give us a
little background on yourselfand how you became an advocate
for mental health.
Speaker 2 (01:56):
Well, on a professional level it's kind of
interesting.
I'm a licensed independentclinical social worker with
close to 45 years experience.
For 32 years I worked in apublic high school kind of
coordinated services for thoseindividuals who had, you know,
social, emotional challenges,including neurological
(02:17):
challenges, and kind of set upteams to support teachers and
support staff to take care ofthese vulnerable population.
That is very much integratedinto the public school.
It's kind of interesting that,given my background and then
prior to that I was a medicalsocial worker, actually at
Beverly Hospital, which is anacute care medical surgical
(02:40):
hospital, so that's myprofessional background and
right now I'm still practicing.
I provide clinical services toindividuals who are dealing with
depression, anxiety, lifetransition, stress in the family
, kind of all of the above.
Given all of that, 16 years agoalmost 17 years ago my son came
(03:02):
to my husband and I describingsome symptoms of having racing
thoughts and some anxiety.
He was having a lot ofdifficulty managing inwardly not
outwardly inwardly some of hisexperiences in life where,
objectively, no one really sawit.
He was, you know, in the top 5%of his class, highly regarded
(03:23):
football player, was a RotaryInternational student, was super
successful, but that did nottranslate to what was going on
with him internally and he washaving a lot of hardship
managing some of the racingthoughts and some of the sort of
intrusive thinking that wasgoing on inside of him.
Speaker 1 (03:44):
So, with all this happening, what were your next
steps?
Speaker 2 (03:48):
To let you know my husband.
He's a clinical psychologist sowe felt like we were pretty
well equipped and had access togood quality services in the
Boston area.
Took him right in to see ahealth professional.
Given the geneticpredisposition on my husband's
side of the family with bipolardisorder, the psychiatrist felt
it was indicated to, you know,get him on a variety of
(04:11):
medication to manage some of theracing thoughts and some of the
issues of the anxiety anddepression.
Speaker 1 (04:16):
With all those challenges, what were the next
steps you used and how did itprogress?
Speaker 2 (04:21):
You know, when it did take some time to manage the
medication.
I mean, that is never easy.
We felt like he was doing great.
He was highly functional, hadfriends, was really very, very
successful in many differentareas.
Being from New England, he wentto one of the NESCAC goals,
played football for four years,traveled the world studying
(04:44):
international studies, worked asa teacher, coach, mentor.
Then he decided to go to socialwork school and at Ivy League
school, did really really well.
And even though he was doingreally well with all of these
areas, one thing that I may haveoverlooked is how he felt about
having a diagnosis and how hefelt about always having to
(05:07):
manage his medication and someof the side effects around that
medication.
So what he did?
He took himself off medicationand when he was 29 years old,
kind of like at the peak ofcareer not the peak but
certainly an entry point ofhaving of what could have been a
very successful career pathTook himself off medication, had
(05:28):
his first psychotic episode,which was frightening for him,
frightening for my husband and I.
He was not living in the area.
We drove right down, we managedcrisis teams, doctors, police
intervention, all of the aboveto get him hospitalized, because
we were that fearful for hissafety.
Speaker 1 (05:45):
I can only imagine how stressful that situation was
.
So what happened?
Speaker 2 (05:50):
from that point moving forward, so that was the
beginning of being in and out ofhospitals, periods of being
super compliant and having a lotof success around that and
living independently andmanaging his life.
But whenever he started playingwith his medications,
eventually coming off themedications, it has wreaked
(06:13):
tremendous havoc and the sadpart is that you know a little
bit about the town we live in.
There's very high standard forhow people should function and
how they should behave, kind oflike that very staunch New
England expectation.
Like everyone has to functionat a thousand percent, a
thousand percent of the time.
And he had to come back home toget some support and regroup
(06:35):
and all of that.
And he did well for a while, asI said, moved out, had his own
apartment, but eventually had tocome back in because off
medication.
There were just so manyencounters with various police
departments that did not displaysensitive behavior and mindful
behavior around someone with aneurobiological medical
(06:57):
condition.
They really weren't interestedin hearing that.
All they wanted was thebehavior to stop.
That was the entry point ofpolice intervention, which did
not go well and it just led toone arrest after the other and
currently my son is at a statehospital right now.
(07:18):
He's competent, he's onmedication.
He's doing great, but at thesame time now he has to
reconcile some of these courtissues, and the sad part is that
in Massachusetts we're one oftwo states that does not have an
outpatient assisted treatmentprogram.
I don't know whether you'refamiliar with that.
You probably are.
Speaker 1 (07:37):
Yes, I'm aware of it.
It's unfortunate it wasn'tavailable for you.
Speaker 2 (07:41):
If we did have that in our state, he would have gone
down a path of treatment versusthe criminal route and the
incarceration, which doesn't doanyone good who has a clear-cut,
diagnosable medical condition.
In fact, all it really does isdeny access for individuals who
(08:01):
are in that situation by nothaving the appropriate treatment
and the appropriate medication.
Speaker 1 (08:06):
Law enforcement and legal professionals are focused
on doing their jobs butsometimes lack the training to
handle these situationseffectively.
Police in particular are forcedto make decisions, sometimes in
seconds, which can lead tomisunderstandings or escalation.
How was the interaction withthe police during this whole
(08:27):
process with your son?
Speaker 2 (08:29):
It did not go well.
I think that if the police werebetter trained in the areas of
mental health crises, if therehad been a clinician connected
to the police department whichdid not happen at all in the
case of my son I think theoutcome would have been very,
very different.
I know that some policedepartments have greater
(08:51):
knowledge of the impact ofmental illness, living in the
sort of town that we do.
There was just zero tolerancefor that, despite the fact that
my husband and I did our very,very best to try to educate them
, that my husband and I did ourvery, very best to try to
educate them.
Arresting someone who is in anacute medical crisis is not the
solution.
It only induces more illness.
(09:16):
It induces more paranoia, youknow, psychotic thinking.
It's just a very unhealthyenvironment.
Speaker 1 (09:22):
Navigating the legal system after a police encounter
can be really tough, especiallywhen judges, district attorneys,
ADAs aren't well-versed inmental illness.
Then you can add that somedefense attorneys are not
well-versed either.
This gap often complicatesthings and makes it rougher on
people such as your son.
(09:43):
Did you run into any situationslike this with him?
Speaker 2 (09:47):
We did.
I think things could have beenhandled much, much differently.
When my son was in court, itwas clear that he was not
mentally stable.
It was clear cut and ratherthan connect with the medical
community, the immediateresponse within the court
environment was to arrest him,send him off to jail, and I feel
(10:11):
like the attorneys could haveadvocated in a much different
way.
I know that some have becomemore well-versed in areas of
mental health.
Because so much of criminalbehavior, shall we say mental
health?
Because so much of criminalbehavior, shall we say?
I'm just talking about thingslike disturbing the peace and
misdemeanors just can escalateto a point if someone is in a
medical crisis.
(10:32):
So I personally feel verydisappointed in law enforcement
in the legal system.
With all due respect, I'm sureit's hard to expect judges, if
you will, to be up on mentalillness, although I think it's
something that people reallyneed more training about, more
sensitivity, about To say tosomeone I don't want you ever
(10:53):
back in my court again.
I mean that's like telling adiabetic the physician never
wants to see them in the ERagain if they go off their
insulin.
That's a really, reallyimportant point.
It's not bad behavior, it's nota personality disorder.
It's a medical condition thatcertainly has behavioral
offshoots, similar to anyneuroatypical condition.
Speaker 1 (11:17):
I've been talking with people around the country
Recently.
I learned about forensictherapists.
Up until then I really didn'tknow what they did.
Are there any in your area whocan advocate for a defendant,
such as your son or whoever itmay be at the time to explain to
the DA and the judicial systemwhat's going on in their mind
(11:39):
and why they're in their currentsituation?
Speaker 2 (11:41):
what's going on in their mind and why they're in
their current situation.
That's an excellent question.
Basically, the forensicpsychologists or clinicians get
involved when someone comes tothe court and is like overtly
psychotic or overtly, you know,disoriented, perhaps doesn't
know where they were born orwhat day it is or who the
(12:02):
current president is.
I mean, I think that those arethe more obvious situations for
sure and I think that courtclinicians can intervene and are
able to kind of deal with theobvious symptomatology.
I think when someone goes inand out of you know kind of like
a pre-psychotic, pre-manticstate, they can seem pretty
(12:23):
articulate.
I mean, for someone who isintelligent, good looking, is
well educated, I thinkimmediately there's bias in the
criminal system and I've seen itplay out time and time again.
It's as if someone with thatkind of a background should know
better.
They should know better not tosay inappropriate things to
(12:47):
strangers or they should knowbetter to know how to manage
their internal sort of likeself-regulation.
So I think there's the obviouscases for sure and I think
individuals in those situationsprobably tend to do better.
Sure, and I think individualsin those situations probably
tend to do better what I'veobserved in the court, that
there is bias against people whoare well-educated.
(13:07):
You know again, should knowbetter.
You know there's a lot ofjudgment around that and I think
that that can also work againstthose individuals.
Speaker 1 (13:17):
In the 70s, autism and other mental health
conditions were poorlymisunderstood.
In the 70s, autism and othermental health conditions were
poorly misunderstood, oftenleading to people being
dismissed as weird or quirkywithout a proper diagnosis.
Now, fast forward, 50 yearslater, we should expect judges,
das, adas, defense attorneys torecognize and not have that they
(13:38):
should know better attitude.
Because they should know betterattitude, because they should
know better that a person'sactions can be shaped by their
mental capacity and may not beable to manage a situation that
they find themselves in.
Speaker 2 (13:51):
I could not agree with you more and I am baffled
why, in the state that I live inthat has access to so many
world-renowned healthcareorganizations, how that doesn't
translate to other institutionslike police departments and the
court and prisons themselves,because, as we know I think the
(14:13):
latest statistics 70 to 80% ofindividuals who are incarcerated
suffer from serious mentalillness.
So I think there's a huge gapin the system and that's what
many of us are advocating for.
We're advocating for change inlegislature Number one.
We're working tirelessly to get, you know, massachusetts passed
(14:35):
as a state that will supportassisted outpatient treatment,
and we're also workingtirelessly to try to get a state
hospital out of the hands ofthe Department of Correction and
into the Department of MentalHealth, which it absolutely
needs to be.
Speaker 1 (14:50):
Now you're working with several organizations to
bring more awareness and getlegislative change.
Is that correct?
Speaker 2 (14:59):
Yes, I'm connected to the National Shattering Silence
Coalition and I'm alsoconnected to other advocacy
groups that are working closelyand collaborating with medical
students and a whole coalitionto try to support these two
change of policies.
Speaker 1 (15:16):
I've been broadcasting my podcast for
almost two years now.
I had one episode about a yearago that covered training for
police officers that would comein contact with those that would
be autistic.
Even then, I really didn'tthink there was a huge problem.
Now I'm doing the Humanity OverHandcuffs the Silent Crisis
(15:36):
special event and I'm findingthere is a huge issue, as I have
had people sharing stories oftheir loved ones sons, daughters
, spouses being incarcerated dueto a lack of knowledge or
misunderstandings.
After hearing these stories, Ibelieve this initiative needs to
be scaled up significantly, notjust training judges, police
(16:00):
DA's, a DA defense attorneys,but the public as well.
If I wasn't aware of thisproblem, considering I'm talking
with people in the autistic andmental health communities, the
general public is likely evenless informed.
We need to do everything we canto share these stories to
foster greater empathy and movebeyond the black and white
(16:21):
thinking.
Speaker 2 (16:23):
I could not agree with you more.
I mean you talked about sort oflike how people are responding
as how they responded in the 60sand 70s, and I can certainly
relate to that mindset for sure.
I feel honored to be able toreflect on that quite truthfully
.
We need to do better, weabsolutely need to do better.
Perhaps people that live inmore urban environments the
(16:44):
police have a higher tolerancefor some of the behaviors.
From what I have observed inthese smaller communities
there's a lot of intolerance.
You know what's happening tothis generation who are being
hit pretty hard with theseneurological conditions.
And just by the way, tony, soyou'll know that from what the
(17:04):
research has shown, with eachgeneration where there's a
pre-existing genetic situationlike bipolar or schizoaffective,
it gets worse through thegenerations.
It doesn't improve because thesocietal norms have much greater
expectations and there's somuch more stress and anxiety of
just being able to live one'slife in such a fast-paced
(17:26):
culture.
So this is something that isnot going away.
I mean more children are beingdiagnosed at younger ages.
Having worked in the schoolsystem for 32 years and you know
, having a lot of closeconnections with community based
treatment centers and hospitals, we can do much better and I
(17:47):
think even the Department ofMental Health needs to step up
and really call serious mentalillness what it is.
It's not like situationalanxiety.
It's not something that you canlike breathe through.
It's a neurological conditionthat needs sort of a medical
model, interdisciplinaryapproach.
Speaker 1 (18:02):
Yeah, I think that people that are in the general
population if they don't haveanyone that's autistic or anyone
that has any mental healthissues, such as serious mental
illness, they just don'tunderstand it.
I was one of those.
Before I started this podcast,I knew nothing about any of this
.
How I've learned is learning onthe job, so to speak.
(18:26):
I've learned by listening andhearing the stories.
So if I didn't know that thiswas a problem, the general
public definitely does notunderstand what's going on.
They think that autism can becured, serious mental illness
can be cured Take a pill andeverything's okay, and sometimes
that's just not the case.
So how do we make this better?
(18:47):
How do we get people tounderstand so we can have more
empathy for those that are goingthrough this?
Speaker 2 (18:54):
There needs to be a lot more education around mental
illness and autism.
For sure.
You bring up a really goodpoint about treatment issues,
one of the key components.
There's a group of medicalstudents and a psychiatrist who
are trying to get thisparticular cluster of symptoms
into the new like diagnosticstatistical manual the one
(19:17):
that's, I think, in the fifthrevision or something.
It's a term called anosognosia,and anosognosia is a
neurological condition where oneactually loses the ability to
kind of like self-reflect onone's individual behaviors.
So, you know, police may comeover to someone and say you know
, like who do you think you aredoing this, that and the other
(19:39):
thing?
And the individual may have nogenuine understanding of how a
problematic behavior isperceived by others, because
that individual can't link in tothemselves and see themselves
as an inner resource.
It's like, hey, what are youdoing?
You know you got to reelyourself in.
You better change this behavior.
That is a neurologicalcondition that people really
(20:02):
don't understand.
I'm a social worker, you knowclinical social worker.
I've had a wonderful career forso many years.
This is something that I've hadto become familiar with myself.
I think that even clinicaltraining has to focus more on
those individuals with seriousmental illness and autism, you
know, and not more like theclassic anxiety and depression
(20:23):
and situational stress sort ofthing.
We need to be better trainedand educate others around this.
Speaker 1 (20:28):
The slogan for my podcast is awareness, acceptance
and understanding.
Speaker 2 (20:35):
I love that.
Speaker 1 (20:36):
Yeah, I tell people you can be aware of something,
you can accept it because you'reaware of it, but until you
understand it, you absolutelyknow nothing about it or what
that person is going through.
I think a big part of why manydiagnoses are coming out now is
because the medical associationis learning more, because
(20:58):
they're getting more clinical.
They're doing that deep dive.
Years ago they didn't have thatknowledge and they just put
somebody as quirky or juststrange.
I know there are a lot oftheories out there for many
different things.
I just think that we'rebecoming more defined and we're
(21:18):
getting a better, greaterunderstanding of people and the
issues that I wholeheartedlyagree with you, for sure I think
that children are beingdiagnosed at record-breaking
numbers with autism.
Speaker 2 (21:33):
When I was growing up in the 50s, 60s and 70s, I
maybe knew one person thatstruggled with communication
skills.
Now having autism and someonebeing nonverbal is not unusual
at all and families having tolearn sign language to
communicate with their loved one.
And also, I do want to say,medication is not easy.
(21:55):
As much as psychiatry is ascience and neurobiology is a
science, finding the rightbalance of medication it has,
you know, from what I haveobserved in my own family family
, has been less than ideal.
There are side effects, there'sweight gains, sort of like
mental fogginess, there's awhole host of symptoms connected
(22:16):
with psychotropic medication.
I think that from what I'veobserved, you know, once someone
accepts their condition whichyou know, in my son's case, has
taken close to nine years, whichyou know, in my son's case, has
taken close to nine years, nineyears of a lot of up and down,
(22:38):
you know, during a very pivotaltime of his life.
He seems to really get that nowand look back and say what was
I thinking Like?
What was I thinking?
What motivated me to get intothese confrontations?
He never had a disciplinereport in high school, never had
an incident incident free, andall of a sudden he had to
integrate, like you know who wasthis person, and that's a
pretty scary thing.
I mean, that's hard tounderstand within oneself.
(22:58):
It just doesn't happen by.
You get on medication becausethe risk of getting off
medication is so high.
It's almost as if in a sad waysometimes individuals have to go
through all this pain anddifficulty to accept their
health condition.
Speaker 1 (23:14):
I read, autism was first discovered in 1910.
At that point in time theydidn't know what it was, so they
call it a mental issue.
Then they treated it withelectrotherapy and put people
through just tremendous pain.
And here we are, a hundred plusyears later.
They've separated everything,when I truly believe that it
(23:38):
needs to be more inclusive, sothat way you can help everyone.
Speaker 2 (23:41):
That's an excellent point.
Thank you for making it.
Speaker 1 (23:44):
Yeah, that's just my opinion.
It's an outsider just lookingat things differently.
So what would you like to tellthe listeners that you think is
important?
They know these illnesses arenot going away.
Speaker 2 (24:14):
They are getting more enhanced through the
generations.
Given the environmental andsort of societal norm pressure
connected with it, I think it'sreally important that our
leaders get involved, ourleaders in each individual state
to recognize that their ownresidents are struggling.
And you know, there needs to beprogrammatic changes and there
needs to be policy changeswithin these states to give
(24:35):
people the treatment that theyare entitled to in a humane,
knowledgeable way, wheredialogue is encouraged between
patient and care providers sothat individuals can share you
know what their needs are too,without it being sort of like a
hands down approach to you knowhealthcare.
Speaker 1 (24:55):
I definitely agree.
Well, this has been great Greatconversation, great information
.
I really appreciate you takingthe time to come on.
Speaker 2 (25:03):
Thank you.
It's a hard thing to do, youknow.
I have to say, I never thoughtthat I would be in this
situation and actually Idiscussed it with my son because
he is very intelligent, youknow.
His competency is restored,he's medication compliant and I
told him about this and hethinks it's great.
He thinks that more people hasto know.
(25:24):
He feels like maybe at somepoint he will have a voice to be
able to express.
You know, which is even moreimportant, but he did want to
make sure that others are.
You know that there is a publicawareness about the role of law
enforcement in the individual'scommunities, because that can
be like a driving situation towhat path someone gets treatment
(25:46):
versus punishment.
Speaker 1 (25:47):
Yes, I think he is 100% correct.
Well, again, thanks for comingon.
Speaker 2 (25:53):
Well, thank you.
I hope that this has beenhelpful.
Speaker 1 (25:55):
It's been great.
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
(26:23):
to you their information, so oneday they may be a guest on our
show.
One more thing we ask telleveryone everywhere about why
Not Me, the world, theconversations we're having and
the inspiration our guests giveto everyone everywhere that you
(26:43):
are not alone in this world.
Welcome to why Not Me ?
The World Podcast, hosted byTony Maitour, broadcasting from
Music City, usa, nashville,tennessee.
Join us as our guests tell ustheir stories.
Some will make you laugh, somewill make you cry.
Their stories Some will makeyou laugh, some will make you
(00:28):
cry.
Real life people who willinspire and show that you are
not alone in this world.
Hopefully, you gain moreawareness, acceptance and a
better understanding for autismaround the world.
Hi, I'm Tony Mantor.
(00:53):
Welcome to why Not Me?
The World Humanity OverHandcuffs the Silent Crisis
special event.
Joining us today is StephanieBylin, a licensed independent
clinical social worker with over40 years of experience,
including 32 years in a publichigh school, where she
coordinated services forstudents with social, emotional
(01:13):
and neurological challenges,creating collaborative teams to
support teachers and staff inmeeting the needs of this
integrated, vulnerablepopulation.
She's also here to sharevaluable information about her
son, who came to her with racingthoughts and having difficulty
processing informationinternally.
This experience led to hernavigating the legal system and
(01:37):
now she shares her insights onwhat happened and her efforts to
support her son.
It's a pleasure to have herhere.
Thanks for coming on.
Speaker 2 (01:46):
Thank you so much.
Speaker 1 (01:47):
The pleasure is all mine If you would give us a
little background on yourselfand how you became an advocate
for mental health.
Speaker 2 (01:56):
Well, on a professional level it's kind of
interesting.
I'm a licensed independentclinical social worker with
close to 45 years experience.
For 32 years I worked in apublic high school kind of
coordinated services for thoseindividuals who had, you know,
social, emotional challenges,including neurological
(02:17):
challenges, and kind of set upteams to support teachers and
support staff to take care ofthese vulnerable population.
That is very much integratedinto the public school.
It's kind of interesting that,given my background and then
prior to that I was a medicalsocial worker, actually at
Beverly Hospital, which is anacute care medical surgical
(02:40):
hospital, so that's myprofessional background and
right now I'm still practicing.
I provide clinical services toindividuals who are dealing with
depression, anxiety, lifetransition, stress in the family
, kind of all of the above.
Given all of that, 16 years agoalmost 17 years ago my son came
(03:02):
to my husband and I describingsome symptoms of having racing
thoughts and some anxiety.
He was having a lot ofdifficulty managing inwardly not
outwardly inwardly some of hisexperiences in life where,
objectively, no one really sawit.
He was, you know, in the top 5%of his class, highly regarded
(03:23):
football player, was a RotaryInternational student, was super
successful, but that did nottranslate to what was going on
with him internally and he washaving a lot of hardship
managing some of the racingthoughts and some of the sort of
intrusive thinking that wasgoing on inside of him.
Speaker 1 (03:44):
So, with all this happening, what were your next
steps?
Speaker 2 (03:48):
To let you know my husband.
He's a clinical psychologist sowe felt like we were pretty
well equipped and had access togood quality services in the
Boston area.
Took him right in to see ahealth professional.
Given the geneticpredisposition on my husband's
side of the family with bipolardisorder, the psychiatrist felt
it was indicated to, you know,get him on a variety of
(04:11):
medication to manage some of theracing thoughts and some of the
issues of the anxiety anddepression.
Speaker 1 (04:16):
With all those challenges, what were the next
steps you used and how did itprogress?
Speaker 2 (04:21):
You know, when it did take some time to manage the
medication.
I mean, that is never easy.
We felt like he was doing great.
He was highly functional, hadfriends, was really very, very
successful in many differentareas.
Being from New England, he wentto one of the NESCAC goals,
played football for four years,traveled the world studying
(04:44):
international studies, worked asa teacher, coach, mentor.
Then he decided to go to socialwork school and at Ivy League
school, did really really well.
And even though he was doingreally well with all of these
areas, one thing that I may haveoverlooked is how he felt about
having a diagnosis and how hefelt about always having to
(05:07):
manage his medication and someof the side effects around that
medication.
So what he did?
He took himself off medicationand when he was 29 years old,
kind of like at the peak ofcareer not the peak but
certainly an entry point ofhaving of what could have been a
very successful career pathTook himself off medication, had
(05:28):
his first psychotic episode,which was frightening for him,
frightening for my husband and I.
He was not living in the area.
We drove right down, we managedcrisis teams, doctors, police
intervention, all of the aboveto get him hospitalized, because
we were that fearful for hissafety.
Speaker 1 (05:45):
I can only imagine how stressful that situation was
.
So what happened?
Speaker 2 (05:50):
from that point moving forward, so that was the
beginning of being in and out ofhospitals, periods of being
super compliant and having a lotof success around that and
living independently andmanaging his life.
But whenever he started playingwith his medications,
eventually coming off themedications, it has wreaked
(06:13):
tremendous havoc and the sadpart is that you know a little
bit about the town we live in.
There's very high standard forhow people should function and
how they should behave, kind oflike that very staunch New
England expectation.
Like everyone has to functionat a thousand percent, a
thousand percent of the time.
And he had to come back home toget some support and regroup
(06:35):
and all of that.
And he did well for a while, asI said, moved out, had his own
apartment, but eventually had tocome back in because off
medication.
There were just so manyencounters with various police
departments that did not displaysensitive behavior and mindful
behavior around someone with aneurobiological medical
(06:57):
condition.
They really weren't interestedin hearing that.
All they wanted was thebehavior to stop.
That was the entry point ofpolice intervention, which did
not go well and it just led toone arrest after the other and
currently my son is at a statehospital right now.
(07:18):
He's competent, he's onmedication.
He's doing great, but at thesame time now he has to
reconcile some of these courtissues, and the sad part is that
in Massachusetts we're one oftwo states that does not have an
outpatient assisted treatmentprogram.
I don't know whether you'refamiliar with that.
You probably are.
Speaker 1 (07:37):
Yes, I'm aware of it.
It's unfortunate it wasn'tavailable for you.
Speaker 2 (07:41):
If we did have that in our state, he would have gone
down a path of treatment versusthe criminal route and the
incarceration, which doesn't doanyone good who has a clear-cut,
diagnosable medical condition.
In fact, all it really does isdeny access for individuals who
(08:01):
are in that situation by nothaving the appropriate treatment
and the appropriate medication.
Speaker 1 (08:06):
Law enforcement and legal professionals are focused
on doing their jobs butsometimes lack the training to
handle these situationseffectively.
Police in particular are forcedto make decisions, sometimes in
seconds, which can lead tomisunderstandings or escalation.
How was the interaction withthe police during this whole
(08:27):
process with your son?
Speaker 2 (08:29):
It did not go well.
I think that if the police werebetter trained in the areas of
mental health crises, if therehad been a clinician connected
to the police department whichdid not happen at all in the
case of my son I think theoutcome would have been very,
very different.
I know that some policedepartments have greater
(08:51):
knowledge of the impact ofmental illness, living in the
sort of town that we do.
There was just zero tolerancefor that, despite the fact that
my husband and I did our very,very best to try to educate them
, that my husband and I did ourvery, very best to try to
educate them.
Arresting someone who is in anacute medical crisis is not the
solution.
It only induces more illness.
(09:16):
It induces more paranoia, youknow, psychotic thinking.
It's just a very unhealthyenvironment.
Speaker 1 (09:22):
Navigating the legal system after a police encounter
can be really tough, especiallywhen judges, district attorneys,
ADAs aren't well-versed inmental illness.
Then you can add that somedefense attorneys are not
well-versed either.
This gap often complicatesthings and makes it rougher on
people such as your son.
(09:43):
Did you run into any situationslike this with him?
Speaker 2 (09:47):
We did.
I think things could have beenhandled much, much differently.
When my son was in court, itwas clear that he was not
mentally stable.
It was clear cut and ratherthan connect with the medical
community, the immediateresponse within the court
environment was to arrest him,send him off to jail, and I feel
(10:11):
like the attorneys could haveadvocated in a much different
way.
I know that some have becomemore well-versed in areas of
mental health.
Because so much of criminalbehavior, shall we say mental
health?
Because so much of criminalbehavior, shall we say?
I'm just talking about thingslike disturbing the peace and
misdemeanors just can escalateto a point if someone is in a
medical crisis.
(10:32):
So I personally feel verydisappointed in law enforcement
in the legal system.
With all due respect, I'm sureit's hard to expect judges, if
you will, to be up on mentalillness, although I think it's
something that people reallyneed more training about, more
sensitivity, about To say tosomeone I don't want you ever
(10:53):
back in my court again.
I mean that's like telling adiabetic the physician never
wants to see them in the ERagain if they go off their
insulin.
That's a really, reallyimportant point.
It's not bad behavior, it's nota personality disorder.
It's a medical condition thatcertainly has behavioral
offshoots, similar to anyneuroatypical condition.
Speaker 1 (11:17):
I've been talking with people around the country
Recently.
I learned about forensictherapists.
Up until then I really didn'tknow what they did.
Are there any in your area whocan advocate for a defendant,
such as your son or whoever itmay be at the time to explain to
the DA and the judicial systemwhat's going on in their mind
(11:39):
and why they're in their currentsituation?
Speaker 2 (11:41):
what's going on in their mind and why they're in
their current situation.
That's an excellent question.
Basically, the forensicpsychologists or clinicians get
involved when someone comes tothe court and is like overtly
psychotic or overtly, you know,disoriented, perhaps doesn't
know where they were born orwhat day it is or who the
(12:02):
current president is.
I mean, I think that those arethe more obvious situations for
sure and I think that courtclinicians can intervene and are
able to kind of deal with theobvious symptomatology.
I think when someone goes inand out of you know kind of like
a pre-psychotic, pre-manticstate, they can seem pretty
(12:23):
articulate.
I mean, for someone who isintelligent, good looking, is
well educated, I thinkimmediately there's bias in the
criminal system and I've seen itplay out time and time again.
It's as if someone with thatkind of a background should know
better.
They should know better not tosay inappropriate things to
(12:47):
strangers or they should knowbetter to know how to manage
their internal sort of likeself-regulation.
So I think there's the obviouscases for sure and I think
individuals in those situationsprobably tend to do better.
Sure, and I think individualsin those situations probably
tend to do better what I'veobserved in the court, that
there is bias against people whoare well-educated.
(13:07):
You know again, should knowbetter.
You know there's a lot ofjudgment around that and I think
that that can also work againstthose individuals.
Speaker 1 (13:17):
In the 70s, autism and other mental health
conditions were poorlymisunderstood.
In the 70s, autism and othermental health conditions were
poorly misunderstood, oftenleading to people being
dismissed as weird or quirkywithout a proper diagnosis.
Now, fast forward, 50 yearslater, we should expect judges,
das, adas, defense attorneys torecognize and not have that they
(13:38):
should know better attitude.
Because they should know betterattitude, because they should
know better that a person'sactions can be shaped by their
mental capacity and may not beable to manage a situation that
they find themselves in.
Speaker 2 (13:51):
I could not agree with you more and I am baffled
why, in the state that I live inthat has access to so many
world-renowned healthcareorganizations, how that doesn't
translate to other institutionslike police departments and the
court and prisons themselves,because, as we know I think the
(14:13):
latest statistics 70 to 80% ofindividuals who are incarcerated
suffer from serious mentalillness.
So I think there's a huge gapin the system and that's what
many of us are advocating for.
We're advocating for change inlegislature Number one.
We're working tirelessly to get, you know, massachusetts passed
(14:35):
as a state that will supportassisted outpatient treatment,
and we're also workingtirelessly to try to get a state
hospital out of the hands ofthe Department of Correction and
into the Department of MentalHealth, which it absolutely
needs to be.
Speaker 1 (14:50):
Now you're working with several organizations to
bring more awareness and getlegislative change.
Is that correct?
Speaker 2 (14:59):
Yes, I'm connected to the National Shattering Silence
Coalition and I'm alsoconnected to other advocacy
groups that are working closelyand collaborating with medical
students and a whole coalitionto try to support these two
change of policies.
Speaker 1 (15:16):
I've been broadcasting my podcast for
almost two years now.
I had one episode about a yearago that covered training for
police officers that would comein contact with those that would
be autistic.
Even then, I really didn'tthink there was a huge problem.
Now I'm doing the Humanity OverHandcuffs the Silent Crisis
(15:36):
special event and I'm findingthere is a huge issue, as I have
had people sharing stories oftheir loved ones sons, daughters
, spouses being incarcerated dueto a lack of knowledge or
misunderstandings.
After hearing these stories, Ibelieve this initiative needs to
be scaled up significantly, notjust training judges, police
(16:00):
DA's, a DA defense attorneys,but the public as well.
If I wasn't aware of thisproblem, considering I'm talking
with people in the autistic andmental health communities, the
general public is likely evenless informed.
We need to do everything we canto share these stories to
foster greater empathy and movebeyond the black and white
(16:21):
thinking.
Speaker 2 (16:23):
I could not agree with you more.
I mean you talked about sort oflike how people are responding
as how they responded in the 60sand 70s, and I can certainly
relate to that mindset for sure.
I feel honored to be able toreflect on that quite truthfully
.
We need to do better, weabsolutely need to do better.
Perhaps people that live inmore urban environments the
(16:44):
police have a higher tolerancefor some of the behaviors.
From what I have observed inthese smaller communities
there's a lot of intolerance.
You know what's happening tothis generation who are being
hit pretty hard with theseneurological conditions.
And just by the way, tony, soyou'll know that from what the
(17:04):
research has shown, with eachgeneration where there's a
pre-existing genetic situationlike bipolar or schizoaffective,
it gets worse through thegenerations.
It doesn't improve because thesocietal norms have much greater
expectations and there's somuch more stress and anxiety of
just being able to live one'slife in such a fast-paced
(17:26):
culture.
So this is something that isnot going away.
I mean more children are beingdiagnosed at younger ages.
Having worked in the schoolsystem for 32 years and you know
, having a lot of closeconnections with community based
treatment centers and hospitals, we can do much better and I
(17:47):
think even the Department ofMental Health needs to step up
and really call serious mentalillness what it is.
It's not like situationalanxiety.
It's not something that you canlike breathe through.
It's a neurological conditionthat needs sort of a medical
model, interdisciplinaryapproach.
Speaker 1 (18:02):
Yeah, I think that people that are in the general
population if they don't haveanyone that's autistic or anyone
that has any mental healthissues, such as serious mental
illness, they just don'tunderstand it.
I was one of those.
Before I started this podcast,I knew nothing about any of this
.
How I've learned is learning onthe job, so to speak.
(18:26):
I've learned by listening andhearing the stories.
So if I didn't know that thiswas a problem, the general
public definitely does notunderstand what's going on.
They think that autism can becured, serious mental illness
can be cured Take a pill andeverything's okay, and sometimes
that's just not the case.
So how do we make this better?
(18:47):
How do we get people tounderstand so we can have more
empathy for those that are goingthrough this?
Speaker 2 (18:54):
There needs to be a lot more education around mental
illness and autism.
For sure.
You bring up a really goodpoint about treatment issues,
one of the key components.
There's a group of medicalstudents and a psychiatrist who
are trying to get thisparticular cluster of symptoms
into the new like diagnosticstatistical manual the one
(19:17):
that's, I think, in the fifthrevision or something.
It's a term called anosognosia,and anosognosia is a
neurological condition where oneactually loses the ability to
kind of like self-reflect onone's individual behaviors.
So, you know, police may comeover to someone and say you know
, like who do you think you aredoing this, that and the other
(19:39):
thing?
And the individual may have nogenuine understanding of how a
problematic behavior isperceived by others, because
that individual can't link in tothemselves and see themselves
as an inner resource.
It's like, hey, what are youdoing?
You know you got to reelyourself in.
You better change this behavior.
That is a neurologicalcondition that people really
(20:02):
don't understand.
I'm a social worker, you knowclinical social worker.
I've had a wonderful career forso many years.
This is something that I've hadto become familiar with myself.
I think that even clinicaltraining has to focus more on
those individuals with seriousmental illness and autism, you
know, and not more like theclassic anxiety and depression
(20:23):
and situational stress sort ofthing.
We need to be better trainedand educate others around this.
Speaker 1 (20:28):
The slogan for my podcast is awareness, acceptance
and understanding.
Speaker 2 (20:35):
I love that.
Speaker 1 (20:36):
Yeah, I tell people you can be aware of something,
you can accept it because you'reaware of it, but until you
understand it, you absolutelyknow nothing about it or what
that person is going through.
I think a big part of why manydiagnoses are coming out now is
because the medical associationis learning more, because
(20:58):
they're getting more clinical.
They're doing that deep dive.
Years ago they didn't have thatknowledge and they just put
somebody as quirky or juststrange.
I know there are a lot oftheories out there for many
different things.
I just think that we'rebecoming more defined and we're
(21:18):
getting a better, greaterunderstanding of people and the
issues that I wholeheartedlyagree with you, for sure I think
that children are beingdiagnosed at record-breaking
numbers with autism.
Speaker 2 (21:33):
When I was growing up in the 50s, 60s and 70s, I
maybe knew one person thatstruggled with communication
skills.
Now having autism and someonebeing nonverbal is not unusual
at all and families having tolearn sign language to
communicate with their loved one.
And also, I do want to say,medication is not easy.
(21:55):
As much as psychiatry is ascience and neurobiology is a
science, finding the rightbalance of medication it has,
you know, from what I haveobserved in my own family family
, has been less than ideal.
There are side effects, there'sweight gains, sort of like
mental fogginess, there's awhole host of symptoms connected
(22:16):
with psychotropic medication.
I think that from what I'veobserved, you know, once someone
accepts their condition whichyou know, in my son's case, has
taken close to nine years, whichyou know, in my son's case, has
taken close to nine years, nineyears of a lot of up and down,
(22:38):
you know, during a very pivotaltime of his life.
He seems to really get that nowand look back and say what was
I thinking Like?
What was I thinking?
What motivated me to get intothese confrontations?
He never had a disciplinereport in high school, never had
an incident incident free, andall of a sudden he had to
integrate, like you know who wasthis person, and that's a
pretty scary thing.
I mean, that's hard tounderstand within oneself.
(22:58):
It just doesn't happen by.
You get on medication becausethe risk of getting off
medication is so high.
It's almost as if in a sad waysometimes individuals have to go
through all this pain anddifficulty to accept their
health condition.
Speaker 1 (23:14):
I read, autism was first discovered in 1910.
At that point in time theydidn't know what it was, so they
call it a mental issue.
Then they treated it withelectrotherapy and put people
through just tremendous pain.
And here we are, a hundred plusyears later.
They've separated everything,when I truly believe that it
(23:38):
needs to be more inclusive, sothat way you can help everyone.
Speaker 2 (23:41):
That's an excellent point.
Thank you for making it.
Speaker 1 (23:44):
Yeah, that's just my opinion.
It's an outsider just lookingat things differently.
So what would you like to tellthe listeners that you think is
important?
They know these illnesses arenot going away.
Speaker 2 (24:14):
They are getting more enhanced through the
generations.
Given the environmental andsort of societal norm pressure
connected with it, I think it'sreally important that our
leaders get involved, ourleaders in each individual state
to recognize that their ownresidents are struggling.
And you know, there needs to beprogrammatic changes and there
needs to be policy changeswithin these states to give
(24:35):
people the treatment that theyare entitled to in a humane,
knowledgeable way, wheredialogue is encouraged between
patient and care providers sothat individuals can share you
know what their needs are too,without it being sort of like a
hands down approach to you knowhealthcare.
Speaker 1 (24:55):
I definitely agree.
Well, this has been great Greatconversation, great information
.
I really appreciate you takingthe time to come on.
Speaker 2 (25:03):
Thank you.
It's a hard thing to do, youknow.
I have to say, I never thoughtthat I would be in this
situation and actually Idiscussed it with my son because
he is very intelligent, youknow.
His competency is restored,he's medication compliant and I
told him about this and hethinks it's great.
He thinks that more people hasto know.
(25:24):
He feels like maybe at somepoint he will have a voice to be
able to express.
You know, which is even moreimportant, but he did want to
make sure that others are.
You know that there is a publicawareness about the role of law
enforcement in the individual'scommunities, because that can
be like a driving situation towhat path someone gets treatment
(25:46):
versus punishment.
Speaker 1 (25:47):
Yes, I think he is 100% correct.
Well, again, thanks for comingon.
Speaker 2 (25:53):
Well, thank you.
I hope that this has beenhelpful.
Speaker 1 (25:55):
It's been great.
Thanks again.
Thanks for taking the time outof your busy schedule to listen
to our show today.
We hope that you enjoyed it asmuch as we enjoyed bringing it
(26:23):
to you their information, so oneday they may be a guest on our
show.
One more thing we ask telleveryone everywhere about why
Not Me, the world, theconversations we're having and
the inspiration our guests giveto everyone everywhere that you
(26:43):
are not alone in this world.
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