ASD = Mental Illness?

[Guest]

Those stories are awful. But they are also wonderful. In both instances once the details were known a lot of people in the community came forward to support them. Of course it's horrible that it had to be after receiving such hateful letters. I don't think that we should forget the supportive loving people out there even as we acknowledge the rude clueless ones.

I never said that we should, and I speak to people all the time. We do not hide our children's diagnoses but we don't waste our time with people that do not understand or are rude either. Anyway, just a quote from the first one in Philadelphia. Not sure if you noticed that part:

 

 

 

"I was approached by parents in the area who have children with disabilities, and they all understand. I used to feel so alone before this. It’s great to know you’re not the only one out there. Turns out that people on my block are going through similar things,†Moran told Philly Magazine.

Did you notice the people that approached her? Now read the last sentence. 

[Jean in Newcastle]

I never said that we should, and I speak to people all the time. We do not hide our children's diagnoses but we don't waste our time with people that do not understand or are rude either. Anyway, just a quote from the first one in Philadelphia. Not sure if you noticed that part:

 

Did you notice the people that approached her? Now read the last sentence.

??? I feel like I'm not responding exactly the way you want me to to the stories? I'm sorry that I didn't have the exact same reaction that you had but it was my honest reaction. I agree that life can suck. And mean people suck. And having disabilities sucks. But I also like to look for the good where I can find it.

[Guest]

??? I feel like I'm not responding exactly the way you want me to to the stories? I'm sorry that I didn't have the exact same reaction that you had but it was my honest reaction. I agree that life can suck. And mean people suck. And having disabilities sucks. But I also like to look for the good where I can find it.

Jean, I wasn't expecting a specific reaction from you. I am just sharing thoughts based on some of your comments. Not trying to convince you of anything. Just pointing out that, for those with more severe kids, things are not as simple as those with kids that are almost indistinguishable out in the real world. Those that don't even have to disclose their kids' diagnoses. Yes, I like seeing the good in people. I have said this many times and I feel that many people come from a good place. But there are many misconceptions out there also. 

Edited July 18, 2017 by Guest

[Jean in Newcastle]

Jean, I wasn't expecting a specific reaction from you. I am just sharing thoughts based on some of your comments. Not trying to convince you of anything. Just pointing out that, for those with more severe kids, things are not as simple as those with kids that are almost indistinguishable out in the real world. Those that don't even have to disclose their kids' diagnoses. Yes, I like seeing the good in people. I have said this many times and I feel that many people come from a good place. But there are many misconceptions out there also. 

 

Well, the point of those stories was in part that these kids were not almost indistinguishable out in the real world, right?  That they stood out in a way that attracted bullies?  I doubt that there are many on this board who don't have our own stories stemming from "real life".

[Guest]

Well, the point of those stories was in part that these kids were not almost indistinguishable out in the real world, right?  That they stood out in a way that attracted bullies?  I doubt that there are many on this board who don't have our own stories stemming from "real life".

 

:confused1:  :confused1:  :confused1:  I'm not quite sure I follow! Wasn't that the whole point? That some of us (myself included) have stories that stem from real life? Also, I don't think you quite got my point, but that's ok. I am not trying to make it personal and I am getting a feeling it might be going that way so I will respectfully bow out  :)

 

Have a good night  :)

Edited July 18, 2017 by Guest

[Storygirl]

Personally, I don't think of autism as mental illness. I do find it jarring when others refer to it in that way.

 

I'm chiming in, because of the comments about how autism may have more acceptance today, and because of the comment about the 70s.

 

In the seventies, my same-age neighbor had what I am sure now is autism. I don't know if his family called it autism, but when talking to my mom about it, I remember her saying that R was not mentally "retarded" (a word we used back then) but had "something else." So Mom didn't know to call it autism. I'm never heard R's parents talking about it, so perhaps they used the term "autism," but I wouldn't know. R didn't speak to us but would recite tv commercials and stim by clapping his fingers together near his face. He was always in special education, so was never in my classes.

 

Anyway, the family had a double tragedy. The dad died of cancer in his early 40s, while the boys (R had an older brother) were young teens. And a year later, the mom died suddenly of a heart attack at age 40, leaving the boys orphaned. The extended family lived in another state, so they came and took the boys, but they only gave a home to the older, neurotypical one. They put R in some kind of institutionalized setting, perhaps a group home.

 

I've always remembered this as a great tragedy. I think our society has come a long way in recognizing that there are people with autism among us, and in offering better help to these families. I would hope that the same situation today would have a different outcome, that the aunt and uncle would have the support they needed to feel comfortable taking in their nephew. I don't think that people with intellectual disability or autism have nearly the rate of institutionalization that they faced forty or more years ago.

 

I definitely think things have improved, and that there has been a corresponding increase in understanding and acceptance among the general public.

 

But I also think that people who are not neurotypical are still dealing with a lot of misunderstanding and/or discomfort from the public. And judgment. Judgment still definitely happens, whether it is over observed behavior, or whether it is based on the terms we use to describe conditions.

 

[wendyroo]

I've always remembered this as a great tragedy. I think our society has come a long way in recognizing that there are people with autism among us, and in offering better help to these families. I would hope that the same situation today would have a different outcome, that the aunt and uncle would have the support they needed to feel comfortable taking in their nephew. I don't think that people with intellectual disability or autism have nearly the rate of institutionalization that they faced forty or more years ago.

 

To the bolded, unfortunately I think the answer is still often no.  In my area (I think mental health services vary tremendously state to state and county to county), there is almost no support for families with autistic children.  

 

My oldest was diagnosed 4 years ago (after a 9 month wait and $3000 out of pocket even with our "good" insurance).  Since then I have been searching and networking to no avail - there are no special schools, programs, social skills classes.  Therapy in or out of the home ends up being about $500 a month on top of the $100 a month we spend on his medications.

 

While our local public schools are highly-rated, I have heard nothing but bad things about how they deal with autistic children.  They either put them in special ed and fail them academically, or they mainstream them and fail them socially and emotionally.

 

IME, raising kids with autism and other mental health challenges is overwhelming, isolating, expensive, frustrating, etc.  It strains your finances, your marriage, your home, your other children, your mental health.  It is sink or swim, and I do not feel like there is any social safety net to catch us if we start to sink.

 

I would love to say that if I had an orphaned autistic nephew that I would take him in without reservation, but I can't.  My decision would have nothing to do with how much I loved him, and everything to do with a realistic understanding that I might be condemning my entire family to spend the rest of our lives as hostages to his issues.

 

Wendy

[Guest]

 

IEF,

 

Speaking gently and without anger: why would the idea of ASD as mental illness "horrify" you?

 

What is more horrifying about mental illness than about a neurological condition? Both are physically based conditions which may have behavioral and emotional consequences. Why such a strong reaction to the possibility of misidentification?

 

I'm glad you've joined the discussion; please don't feel like I'm being critical, but I was hoping you could explain this a bit more.

No, you are absolutely right in trying to educate me instead of telling me to keep my nose out of other people's business and I owe you all an apology.

 

I was just coming back to delete/edit my post because I'd realized that myself. Talk about invisible chronological snobbery neurotypical prejudice, lol.

 

You already quoted me and the "random John Q. Public" value of my tirade is actually more valuable to you guys as it is anyway, so no hard feelings and I'm not even going to read anything you say if you want to quote me and say, "See? That's my point. Those normies are idiots!" for the next 20 years or 20 pages, whichever comes first.

 

Mental illness isn't any more of a character defect than cancer, I'm just brainwashed and learning from people who are different from myself now that we have the internet so we can talk about these things openly and honestly.

 

I'm sure I'd feel the same way about my own mother if I'd grown up in a culture where people said, "Oh look, it's a cancer! IEF's mother had cancer, nya nya nya, IEF's mother had cancer, nya nya nya! Hey IEF, we all know your mother had cancer and we all know that means YOU might have cancer so don't try to pretend to be a human being when we all know you're a cancer and cancers aren't people! Nya Nya Nya, IEF's mother had cancer!"

 

And one more one more thing: the most powerful thing you did to educate me was just being yourselves; I came back expecting to be able to delete my offensive screed before anyone saw it and found all these posts by all these people trying so hard to give me the benefit of the doubt...

 

Well, actions speak louder than words.

 

I'm not going to say, "You're so brave! I could never do that!" but I am going to say that I had no idea that this board was so active and yea, of course I'd do whatever it takes to help a mentally ill child if I had one just the way I already do whatever it takes with my neurotypical kids because that's what mothers do. If it's not in the dictionary definition of "mother" then it should be.

Edited July 18, 2017 by Guest

[Guest]

 

 

In the seventies, my same-age neighbor had what I am sure now is autism. I don't know if his family called it autism, but when talking to my mom about it, I remember her saying that R was not mentally "retarded" (a word we used back then) but had "something else." So Mom didn't know to call it autism. I'm never heard R's parents talking about it, so perhaps they used the term "autism," but I wouldn't know. R didn't speak to us but would recite tv commercials and stim by clapping his fingers together near his face. He was always in special education, so was never in my classes.

 

 

 

 

That was the point I was trying to make. Among the culture of the elementary school I attended, the word "retart" was both a horrific insult and a generic term that included ASD, bipolar, ptsd and perfectly healthy neurotypical children who just so happened to live in a single parent home.

 

My parents are still dealing with their guilt, at the ages of 82 and 83.

 

To me and anybody who could be reasonably expected to read this, they have no reason whatsoever to be ashamed of the fact that they realized that they had irreconcilable differences and made responsible decisions about coparenting their children.

 

They were told, however, that they should have stayed together for the sake of the children because everybody knew that products of broken homes were emotionally disturbed.

 

We've come a long way since then now keep going.

 

If one of my kids gives birth to or decides to adopt a mentally ill child, I want the next do-gooder who clicks on a random post to say, "Congratulations!" Not "WHA????? Why would you want to do a stupid thing like that?" or even worse, "You are so brave! I could never do that!"

 

That's what i was trying to say. What came out of my fingers was offensive and insulting to pretty much everyone who read it because I just.didn't.know.any.better,

[Innisfree]

(((IEF)))

 

Please, don't worry. I really am glad to have more people thinking and taking part in these conversations. I'm glad you jumped in. If you'd like, I'll delete the quote. Your kind intent was clear. These are things we may not get practice talking about until we find ourselves dealing with them.

[Guest]

What came out of my fingers was offensive and insulting to pretty much everyone who read it because I just.didn't.know.any.better,

IEF, most of my posts beyond the comment that you were trying to be supportive had nothing to do with you. I exited the conversation but just wanted to come back and explain that. I was not offended by your comments. It's people like you, people that want to talk, want to know and understand, that I like speaking to. It's people that have the mentality of the people that wrote those letters that I avoid. Prejudice and bullying of any type is deplorable in my eyes. Seeking to understand is what empowers change. Thank you for being that kind of person :grouphug: Edited July 18, 2017 by Guest

[Storygirl]

Wendy, I can't "like" your post, but I appreciate what you are saying. I do think services vary widely. In my state, services vary by county, so even within the state, there are better places to get help. And then within each county, each school district offers different services. We did some tours of school districts this spring, and we found that services for SLDs/social (DS's IEP goals)  were not the same across the board. Surprisingly, the school district that we liked the least happens to be the one that is considered a top choice, according to word of mouth.

 

I'm sorry you can't get more help where you live. It's really disheartening. I kind of wish you could move.

 

And I think that since ASD is a spectrum, there is just a wide gulf of needs and a huge variety of related behaviors and comorbid conditions. I have no doubt that the general public has a more accepting attitude toward some aspects of autism than others.

 

 

[Jean in Newcastle]

 

And I think that since ASD is a spectrum, there is just a wide gulf of needs and a huge variety of related behaviors and comorbid conditions. I have no doubt that the general public has a more accepting attitude toward some aspects of autism than others.

 

This is the thing.  So it makes speaking in sweeping generalizations impossible.  And it means that while we absolutely should share our own experiences and observations, we can't discount other people's experiences and observations because it all depends on so many different variables.  I really think that it comes down to support for others in our community (even online) even if their experience doesn't mirror our own.  That's one reason I love this board so much. 

[Jean in Newcastle]

I also want to point out that we all have our own baggage, our own struggles in this ASD journey whether as a parent or as someone with ASD.  (Same with mental illness.)  It's not helpful to do the "my struggles are worse than your struggles" thing.  I'm not saying that anyone here is doing that but I've come across that at times in real life.  Some struggles probably are worse but it's not like any of us chose our struggles or have any control over the severity.  And comparing like that doesn't make anything easier and can make things harder.  At least this is my opinion. 

[kbutton]

Something said upthread made me think that part of how/why people define things differently is "What is at stake?" The historical answer to that question is a moving target, and it's clear from this thread that even regional answers are going to be different. It's not just specific to the diagnosis.

 

Depending on what decade we're talking about, there were much fewer effective treatment options for people with mental illness, and the treatments that did exist might have been horrific, and at the very least, were not necessarily appropriate for everyone with the same diagnosis (the whole, if we have only a hammer, everything must be a nail). I imagine people fought tooth and nail to NOT call things a mental illness at various points in history if they could deal with it at home (some out of compassion and some out of stigma). The idea of people who simply had lower IQs being put into institutions where they were at risk of being victimized by people who were not getting appropriate mental health treatment comes to mind. 

 

I think we live at a time where if you live where services (mental health and otherwise) are good, available, and appropriate, the bigger risk is under-diagnosis. We also probably intervene for a much broader range of issues than in the past due to more treatment options being available, but people's thinking hasn't necessary kept pace.

 

That is a huge swing in generational terms. 

 

I do not mean to discount experiences like Wendy's in any of this--she is in a position where the game has kind of left her situation undefined or written it out of the script. I think that every time service models, diagnostic criteria, etc. change (even when it's "better"), someone is disadvantaged in some way or left out. My SN parenting group at church has been finding that the changes being made in the social security system regarding developmental disabilities are making waves and requiring creativity on the part of parents, caregivers, etc. (There have been parents on the boards who talk about this, but I can't think of the particular boardie's name right now that has given some instances of things like this from her son's needs.) In this case, one change that is (in some cases) bigger on paper than IRL, but still has to be navigated, is that all people with developmental disabilities are being re-evaluated for work in the community vs. sheltered workshops. There are real reasons for this change that are legit, but it's a big change, and it will cause a lot of hassle for some groups of people. And those are relatively big waves even though that is being made in a population that already meets a very specific set of criteria. 

 

Anyway, I think that there is often a lot of background that goes into our classifying things, and we don't even realize it. Some of our knee-jerk reactions are based in a real fear that comes from historical treatment of mental illness. Not everyone has a nuanced or updated version of what replaced old horror stories because they haven't had it hit home.

 

And as Jean said, we have different pictures of what mental illness looks like depending on whether we know people who are treated or not treated (or even diagnosed). 

[Jean in Newcastle]

Something said upthread made me think that part of how/why people define things differently is "What is at stake?" The historical answer to that question is a moving target, and it's clear from this thread that even regional answers are going to be different. It's not just specific to the diagnosis.

 

Depending on what decade we're talking about, there were much fewer effective treatment options for people with mental illness, and the treatments that did exist might have been horrific, and at the very least, were not necessarily appropriate for everyone with the same diagnosis (the whole, if we have only a hammer, everything must be a nail). I imagine people fought tooth and nail to NOT call things a mental illness at various points in history if they could deal with it at home (some out of compassion and some out of stigma). The idea of people who simply had lower IQs being put into institutions where they were at risk of being victimized by people who were not getting appropriate mental health treatment comes to mind. 

 

I think we live at a time where if you live where services (mental health and otherwise) are good, available, and appropriate, the bigger risk is under-diagnosis. We also probably intervene for a much broader range of issues than in the past due to more treatment options being available, but people's thinking hasn't necessary kept pace.

 

That is a huge swing in generational terms. 

 

I do not mean to discount experiences like Wendy's in any of this--she is in a position where the game has kind of left her situation undefined or written it out of the script. I think that every time service models, diagnostic criteria, etc. change (even when it's "better"), someone is disadvantaged in some way or left out. My SN parenting group at church has been finding that the changes being made in the social security system regarding developmental disabilities are making waves and requiring creativity on the part of parents, caregivers, etc. (There have been parents on the boards who talk about this, but I can't think of the particular boardie's name right now that has given some instances of things like this from her son's needs.) In this case, one change that is (in some cases) bigger on paper than IRL, but still has to be navigated, is that all people with developmental disabilities are being re-evaluated for work in the community vs. sheltered workshops. There are real reasons for this change that are legit, but it's a big change, and it will cause a lot of hassle for some groups of people. And those are relatively big waves even though that is being made in a population that already meets a very specific set of criteria. 

 

Anyway, I think that there is often a lot of background that goes into our classifying things, and we don't even realize it. Some of our knee-jerk reactions are based in a real fear that comes from historical treatment of mental illness. Not everyone has a nuanced or updated version of what replaced old horror stories because they haven't had it hit home.

 

And as Jean said, we have different pictures of what mental illness looks like depending on whether we know people who are treated or not treated (or even diagnosed). 

 

So true.  My brother and his wife were told to institutionalize their (now 40 something) son with Down's Syndrome when he was born.  They were really bucking the system when they refused.  

 

In Japan, where I grew up, I interned two different summers at a Japanese hospital that had a wing devoted to patients with developmental disabilities and brain damage.  All of the adult patients at that time had been dropped off at the hospital gates.  I was told that most parents told friends and family that the child was stillborn.  Some never came back to see their child.  Others would sneak in to visit them on weekends so that no one else would know.  The power of stigma can be awful depending on the culture and time. 

 

The workers truly did try to work with these patients but standard of care has improved so much over time.  Some of the oldest patients had limbs that were frozen and immobile because in the old days they didn't understand that you needed to provide range-of-motion exercises to keep that from happening. 

 

 

[kbutton]

So true.  My brother and his wife were told to institutionalize their (now 40 something) son with Down's Syndrome when he was born.  They were really bucking the system when they refused.  

 

In Japan, where I grew up, I interned two different summers at a Japanese hospital that had a wing devoted to patients with developmental disabilities and brain damage.  All of the adult patients at that time had been dropped off at the hospital gates.  I was told that most parents told friends and family that the child was stillborn.  Some never came back to see their child.  Others would sneak in to visit them on weekends so that no one else would know.  The power of stigma can be awful depending on the culture and time. 

 

The workers truly did try to work with these patients but standard of care has improved so much over time.  Some of the oldest patients had limbs that were frozen and immobile because in the old days they didn't understand that you needed to provide range-of-motion exercises to keep that from happening. 

 

 

 

Exactly. And we think of generational terms as being a couple of decades, but really, negative or stigmatizing things influence a longer range of memory than good experiences, more than likely. One of the parents in our SN group at church had an uncle with Down's, and her family also bucked that advice, though it was an earlier timeframe.

 

When I was newly out of college (now quite some time ago--almost that twenty years I referenced), I worked with someone who is a Quaker and is in my parents' age range. His parents' generation was from the timeframe when conscientious objectors (WWII) were often assigned work in mental institutions and became the people who advocated for change as a result (though obviously, many Quakers/Friends were social reformers all along). He said the stories were horrifying. That is just two generations between his parents'/my grandparent's day and me. What a huge change in that time.

 

If an area is rural and characterized by lack of resources, it also takes time for thinking and expectations to catch up to what is available or to what people in "the city" are thinking. Sometimes that is good--I suspect that some people from my hometown with Down's were NOT institutionalized because their families thought it would be too far to go to visit their kids and said they'd figure it out themselves. I am in my early 40's, and there were definitely kids around my age with Down's who lived at home. There were also kids not that much older (older than me, but younger than my parents) who were not entitled to an education in the school system because they were deemed unable to be educated.

 

Alternatively, the "county poor farm" still looms large in memory in my hometown (though I don't live there now), and it's not a great association! Those facilities are the grounds of what is now modern care and social services (including disability services/mental health) for the whole county, but people still call it The Poor Farm when they can't come up with the name of the skilled nursing facility located there or the words Human Services. The good things happening now are very much tied, both geographically and in memory, with negative things from the past.

 

I imagine it's hard to live with "if we'd only known, we could have done that" as a caring worker who is actually giving good care, but that is a whole other discussion!

[Jean in Newcastle]

I also wanted to mention something about the "sharing and stigma" thing that some have mentioned.  It's not always stigma that keeps people from sharing.  Some people are just more private.  I stopped sharing details about both my kids once they hit about 10 years old.  I'm not ashamed of anything.  I just do not want stuff forever about them on the world wide web.  I do share in real life with close friends and family.  Or I share privately in PMs with friends.  So if you just go from what some of us have shared or not shared, you may get a skewed view of how things are in our home.  Again - not out of stigma but because you might not be in the inner circle that gets all the details.  Or at least most of them.  I do try to give my teens/ young adults privacy in real life as well.