Mom shares the less-than-pretty truth about raising a child with autism in ‘Autism Uncensored’

[Starfire]

I did not know you are a parent dealing with it also. Even though I joined here a long time ago, I just recently came back so I'm a noob and don't know anyone here. I would not have a problem with a parent being candid. Even my own writing about what they have to deal with. It's just telling the truth.

I mentioned it on the previous page of this thread where I talk about the experience I had yesterday at 6.15am. If you had time to read it, it may help explain to you why I hold the views I do about the author.

 

[Mary Terry]

This thread is very helpful to my understanding of many things.

I "get" the reason why she wrote the book and do not begrudge her money she makes from it, she is entitled to write the book, all of that is fine, free speech, free enterprise, etc.

However, I don't like this author/mother's dragging her terrified child into public situations on some theory she is desensitizing his neurological "impediments". I would never do that to my loved ones or anyone else. I guess she is just being brutally frank about her own emotions and feelings but there is something very, very cold about them to me. There must be better ways to deal with issues - or alleged issues - of autism. The world needs input from the ASD community to know what to do. How would or did people on the spectrum feel if their mother dragged them into scary places when they were children? What do they think about that? What do they think the mother should be doing? This is the info needed by the world.

 

[Starfire]

I'm not sure, you up for some book writing to test this out?

My guess is that there'd be some backlash, but less, but of course I don't know since I don't hold that view.

I might give it some thought you know! It would have to have a purpose though, not just a book of frightening or dangerous ‘war stories!’ I could fill a book already with those.

The interaction dynamics might be interesting, my ability to be be able to almost read her mind, correctly predict what she will do next, see through her lies while she convinces everyone else otherwise, and my almost total inability to do the same with my NT daughter. It’s the same for my wife, in opposite. That would be more interesting than reading about used sanitary pads dumped on the bathroom floor or wet beds etc or being screamed at about how much she hates us on a main shopping street, but no less real nonetheless.

 

[Starfire]

This thread is very helpful to my understanding of many things.

I "get" the reason why she wrote the book and do not begrudge her money she makes from it, she is entitled to write the book, all of that is fine, free speech, free enterprise, etc.

However, I don't like this author/mother's dragging her terrified child into public situations on some theory she is desensitizing his neurological "impediments". I would never do that to my loved ones or anyone else. I guess she is just being brutally frank about her own emotions and feelings but there is something very, very cold about them to me. There must be better ways to deal with issues - or alleged issues - of autism. The world needs input from the ASD community to know what to do. How would or did people on the spectrum feel if their mother dragged them into scary places when they were children? What do they think about that? What do they think the mother should be doing? This is the info needed by the world.

I understand what you are saying about her feelings and emotions being cold, that is something people with ASD are often accused of, I know I have and am. To me it’s a matter of perspective and how we and our actions are perceived though, let me elaborate.

When my child was around 6 she was small for her age and being bullied. I wanted to march to school and confront the kids and their parents to make them see I meant business and to make it stop, but apparently that is inappropriate. So I did some research and found a martial arts club near and arranged a lesson. My wife attended a meeting at school.

She didn’t want to go, she cried and was upset, my wife was upset too. They all cried, but I couldn’t understand why so I took her regardless. To me I wasn’t being cold or uncaring, because I had her best interests at heart. I “threw her in at the deep end” and left for the 45 minutes. When I collected her, she had survived as I said she would. I took her back again and again. Years later and nearly a black belt a boy at school started bullying her again, and she beat the hell out of him in front of his friends. School phoned home. My wife chastised her, I congratulated her for standing up. She won many medals and trophies and has a fearsome reputation not to be messed with at school now. She doesn’t need to fight anymore, because the bullies know she can.

In a way I did this by forcing her to go, sometimes we have to be cruel to be kind, like I said perhaps it’s a case of perspective -

“However, I don't like this author/mother's dragging her terrified child into public situations on some theory she is desensitizing his neurological "impediments".

 

[Mary Anne]

Why is that? Perhaps because there is merit?

And again your choice of words "chastised"

A different word could be "informed"

Perhaps ND adults are "informing" people. They are the told that they have been "chastising" them.

This is what autistic people are used to. Having their intent judged incorrectly.
Try living a life when everything you do to 'inform"
Is taken as a chastisement.... When it isn't.

Try to help someone who blames you for the interpretation they have of your meaning, when it wasn't your meaning at all.

This is Central to the whole thing.



I find that unlikely.

You've joined two things together here. The result is giving a very disparaging view of the ND imo.

I do not wonder why you engender a strong reaction from people.

I don’t understand what you mean. I am caught in the middle as aspie and not aspie. I DO help people, but realize that in I sound intense in emails, but not in real life.

 

[Mary Anne]

I used to watch a youtube video channel called Kreed's World. It featured a severely autistic teen and his mom. At the age of 17 Kreed (who had medical issues) went into a coma and died. His mom was absolutely devastated. Her reaction broke my heart and that's not easy to do.

Seems most of Autism Speaks and this book is about upper class career woman who are burdened by their autistic kids. I feel bad for Kreed's mom, not those other moms.

Why does “upper class” even come into this conversation? Autism touches all economic classes. This author is working hard to create public accepting autistic-friendly places, and fundraisers for families. She is not profiting. I always wonder why when people work hard do good things, that others are critical. Is this a human trait we all have innately?

 

[Otenba]

Why does “upper class” even come into this conversation? Autism touches all economic classes. This author is working hard to create public accepting autistic-friendly places, and fundraisers for families. She is not profiting. I always wonder why when people work hard do good things, that others are critical. Is this a human trait we all have innately?

My guess would be it's others' insecurity coming through because they feel guilty or something for not being just as good in comparison, so they look for reasons to put the good person's efforts down so they feel better. It's how bullying works usually.

 

[Mary Anne]

Mary Anne - I'm NT and have worked many years as a volunteer tutor for young adult autistics who are trying to obtain their GEDs. I also have a HFA sister-in-law and her son (my nephew) who is LFA.

You make some good points but I think most autistic people struggle so much with daily life that they have no energy or willingness to deal with the disruptive behaviors of LFAs if they don't have to. My students would probably be deemed high functioning to get as far as they did in school but so many other factors seem to sabotage their ability to get a high school diploma. I used to try to get them to help each other in class - to get the ones who are good at math to help the ones who are not good at math, etc. It was not successful, the students did not want to do it, it increased their stress, and I no longer ask them to help each other. That was a failed experiment for me. They just have too much sensory and brain overload in the classroom to even try to help someone else like them. It takes all their energy to study and learn for themselves.

Autism seems to run in families. There must be hundreds of thousands of autistic parents who deal with their autistic children every day and autistic adult siblings who deal with their autistic siblings every day. We are lacking their voices, insights, opinions and suggestions about how to deal with the LFAs. What should a parent do about a child who smears feces on walls, breaks everything in the house, or attacks other children every day? How should the adult handle that situation or modify that behavior? Lock them up in institutions? Put them in straight jackets? Isolate them from the entire world? Enroll them in ABA?

We need to know from those on the spectrum what we should be doing for the LFAs as well as for HFAs who also exhibit undesirable behaviors. I agree that those voices are lacking.

Let me say thank you, and yes I agree. There are people with autism that want autistic people to be running the non-profits, and autism awareness organizations. They want public activism, and are quite loud about asking for it. That’s what got me wondering why the Bill Gates Foundation, or other known autistic millionaires would not want to create a non-profit run by people with autism. Because so many on these forums want that. But I can see now by reading so many posts, that people who want it, cannot do it themselves for any number of reasons.

I still believe that autism support specialists, even very disabled, could lend support, coaching, and advice to frazzled parents, from their computers, all over the world, and make some income also. I am not good in business, and cannot start this venture.

 

[Mary Anne]

I understand what you are saying about her feelings and emotions being cold, that is something people with ASD are often accused of, I know I have and am. To me it’s a matter of perspective and how we and our actions are perceived though, let me elaborate.

When my child was around 6 she was small for her age and being bullied. I wanted to march to school and confront the kids and their parents to make them see I meant business and to make it stop, but apparently that is inappropriate. So I did some research and found a martial arts club near and arranged a lesson. My wife attended a meeting at school.

She didn’t want to go, she cried and was upset, my wife was upset too. They all cried, but I couldn’t understand why so I took her regardless. To me I wasn’t being cold or uncaring, because I had her best interests at heart. I “threw her in at the deep end” and left for the 45 minutes. When I collected her, she had survived as I said she would. I took her back again and again. Years later and nearly a black belt a boy at school started bullying her again, and she beat the hell out of him in front of his friends. School phoned home. My wife chastised her, I congratulated her for standing up. She won many medals and trophies and has a fearsome reputation not to be messed with at school now. She doesn’t need to fight anymore, because the bullies know she can.

In a way I did this by forcing her to go, sometimes we have to be cruel to be kind, like I said perhaps it’s a case of perspective -

“However, I don't like this author/mother's dragging her terrified child into public situations on some theory she is desensitizing his neurological "impediments".

Amazing, and frightening story! Luckily, your 6 year old did not get suspended from school. Glad it all worked out, but as a mother I could not have gone along with that - was your daughter beaten up “again and again? “Survival” can be traumatizing!

As for that author, I think she was desperate to have SOMETHING/ ANYTHING work. Nothing the doctors told her worked! Perhaps she was so traumatized with the years of her own suffering, and her deep love of her son, that she just took matters into her own hands. When nothing is working, what would any parent be expected to do? I keep hearing critics of parenting styles of very challenged autistic children. When nothing works, parents usually join “those organizations” (greatly hated by many). They are desperate for help, for tools, for emotional support, for relief, for sleep, for caretaking help, etc.

She did what she thought was best- just like you did with your daughter.

 

[55853]

How would or did people on the spectrum feel if their mother dragged them into scary places when they were children? What do they think about that? What do they think the mother should be doing? This is the info needed by the world.

I can't speak for anyone but myself, so I don't have any input on what the mother should be doing. Personally, I'm glad I had to go through everything I did. It's had its negatives, but I think it's benefitted me overall.

 

[Mary Anne]

I'm not sure, you up for some book writing to test this out?

My guess is that there'd be some backlash, but less, but of course I don't know since I don't hold that view.

I'm super sorry!! I misread/misunderstood what you trying to say. I feel like a huge jerk right now. You don't need to apologize because it's not your fault at all, I'm the one who misinterpreted what you said. It was a knee jerk reaction and I should have double checked your post before replying. I hope you can forgive me since I truly apologize.

Please please don’t feel that way, ok? I am learning myself about challenges in communicating. It’s ok.

 

[55853]

Please please don’t feel that way, ok? I am learning myself about challenges in communicating. It’s ok.

Why would you be “ vilified” or called a “traitor? More books need to be written by those with autism- especially if they are raising autistic children. I do not understand.

Neither of these look like replies to me - are you aware you've quoted me?

 

[Tesseract]

I did find one parent’s comments extremely useful though:
She said in the comment response to the above negative comments, “I don't understand, then, why autistic adults don't help families who have children with severe autism? Why aren't they in the home, providing practical, hands-on help? Why aren't they spending one-on-one time with individuals who have severe autism? No autistic adult has ever been interested in spending time with my autistic son.”

Could the answer to her first question here be "because we already have enough problems of our own to deal with"?

 

[Mary Anne]

But do you think it would be any different if a parent with ASD wrote a book in a similar vein? I bet if I wrote one about the day to day reality of living with my daughter, even if the front and back cover of the book were photocopy’s of our diagnosis’s for proof, I bet I would still be vilified. The word traitor for some reason springs to mind.

Starfire, why would you be a “traitor,” or “vilified?” Please help me to understand what you mean.

 

[Mary Anne]

Could the answer to her first question here be "because we already have enough problems of our own to deal with"?

But there are high functioning autism activists that could bring so much more education, parenting skills, and general awareness to the public beyond TED Talks? When NTs spread “awareness” and “education,” and “science,” it’s generally not accepted by the autism community. It would be great for more Autistics who were lower functioning as kids to let society KNOW how they grew up, moved forward, transcended crushing childhood disabilities, and live as adults in productive ways. I think the more this happens, the more that the world will gain more empathy, and understanding. Otherwise, it’s just the ongoing societal stereotypes of screaming, violent, biting, non-communicative, stimming children, that grow up hidden away from the world. That is the current stereotype - out of sight and out of mind is a common figure of speech.

 

[Starfire]

Starfire, why would you be a “traitor,” or “vilified?” Please help me to understand what you mean.

What I mean is this. Many people including myself have suffered greatly from early childhood, school years, teens and onward due to the their difficulty's and treatment at the hands of others in the wider community shall we say.

We withdrew as a means of self defence by using drugs or alcohol or absorbing ourselves in our interests, hobbies or passions etc, sometimes to an obsessional degree perhaps, all of which I did, do and have done.

We didn’t fit in so we learned to live separately and apart. We learnt how to function in a different way from the majority. I work alone, I don’t have a single friend in the world but I consider myself one of the very lucky ones. I managed to meet a kind and loving NT woman and eventually forge a relationship which resulted in children, despite my disinterest in sex or intimacy. It hasn’t been easy especially for my wife who is very gregarious, and I’m not. She has often been unhappy due to my behaviour, and now we have an autistic and a NT daughter too.

The autistic world/community is very small. We tend to seek each other out to talk and communicate often through the internet because we can largely understand each other, but outside of that most of us I think, are rather private people. However, many of us understand ourselves quite well and the world we live in.

We know the wider community is not particularly interested in or empathetic towards our difficulties. They may be interested in the autistic boy who draws a city from memory, or a girl performing impressive mathematics but that’s it. However, those ‘talents’ are the exception. The day to day reality of living with autism for the majority is not like that, but it doesn’t mean we need to discuss it.

So, when someone from inside that small community writes a book ‘washing the dirty laundry in public’ to some it’s perceived as an attack on an already vulnerable community. It makes us or our children ‘look bad’, it doesn’t paint the picture some would prefer. There are autism activists who can be quite confrontational and aggressive towards people they see as being detrimental to the autistic community, they see themselves as being protectors and do it with the best of intentions.

So when I use the words “traitor” or “vilified” what I mean is people who I trust or trust me in the community, may feel that someone from ‘inside’ who writes about the more extreme and upsetting side to autism such as I touched on the other day, or this woman’s book is no longer to be trusted and should be excluded from the community as they are capitalising on it for personal financial gain.

I don’t know if that answers your question but it’s late here, I’m exhausted and I need to sleep. It’s the best I can do today. Also bear in mind this is all my opinion, and I’m writing from my personal experience, I don’t speak for anyone else and I may be incorrect in how I perceive things.

 

[Mary Anne]

I understand what you are saying about her feelings and emotions being cold, that is something people with ASD are often accused of, I know I have and am. To me it’s a matter of perspective and how we and our actions are perceived though, let me elaborate.

When my child was around 6 she was small for her age and being bullied. I wanted to march to school and confront the kids and their parents to make them see I meant business and to make it stop, but apparently that is inappropriate. So I did some research and found a martial arts club near and arranged a lesson. My wife attended a meeting at school.

She didn’t want to go, she cried and was upset, my wife was upset too. They all cried, but I couldn’t understand why so I took her regardless. To me I wasn’t being cold or uncaring, because I had her best interests at heart. I “threw her in at the deep end” and left for the 45 minutes. When I collected her, she had survived as I said she would. I took her back again and again. Years later and nearly a black belt a boy at school started bullying her again, and she beat the hell out of him in front of his friends. School phoned home. My wife chastised her, I congratulated her for standing up. She won many medals and trophies and has a fearsome reputation not to be messed with at school now. She doesn’t need to fight anymore, because the bullies know she can.

In a way I did this by forcing her to go, sometimes we have to be cruel to be kind, like I said perhaps it’s a case of perspective -

“However, I don't like this author/mother's dragging her terrified child into public situations on some theory she is desensitizing his

 

[Mary Anne]

What I mean is this. Many people including myself have suffered greatly from early childhood, school years, teens and onward due to the their difficulty's and treatment at the hands of others in the wider community shall we say.

We withdrew as a means of self defence by using drugs or alcohol or absorbing ourselves in our interests, hobbies or passions etc, sometimes to an obsessional degree perhaps, all of which I did, do and have done.

We didn’t fit in so we learned to live separately and apart. We learnt how to function in a different way from the majority. I work alone, I don’t have a single friend in the world but I consider myself one of the very lucky ones. I managed to meet a kind and loving NT woman and eventually forge a relationship which resulted in children, despite my disinterest in sex or intimacy. It hasn’t been easy especially for my wife who is very gregarious, and I’m not. She has often been unhappy due to my behaviour, and now we have an autistic and a NT daughter too.

The autistic world/community is very small. We tend to seek each other out to talk and communicate often through the internet because we can largely understand each other, but outside of that most of us I think, are rather private people. However, many of us understand ourselves quite well and the world we live in.

We know the wider community is not particularly interested in or empathetic towards our difficulties. They may be interested in the autistic boy who draws a city from memory, or a girl performing impressive mathematics but that’s it. However, those ‘talents’ are the exception. The day to day reality of living with autism for the majority is not like that, but it doesn’t mean we need to discuss it.

So, when someone from inside that small community writes a book ‘washing the dirty laundry in public’ to some it’s perceived as an attack on an already vulnerable community. It makes us or our children ‘look bad’, it doesn’t paint the picture some would prefer. There are autism activists who can be quite confrontational and aggressive towards people they see as being detrimental to the autistic community, they see themselves as being protectors and do it with the best of intentions.

So when I use the words “traitor” or “vilified” what I mean is people who I trust or trust me in the community, may feel that someone from ‘inside’ who writes about the more extreme and upsetting side to autism such as I touched on the other day, or this woman’s book is no longer to be trusted and should be excluded from the community as they are capitalising on it for personal financial gain.

I don’t know if that answers your question but it’s late here, I’m exhausted and I need to sleep. It’s the best I can do today. Also bear in mind this is all my opinion, and I’m writing from my personal experience, I don’t speak for anyone else and I may be incorrect in how I perceive things.

I thank you for an incredibly expressive, and thoughtful answer. Just know that there ARE people that want to know what it’s like. I do! Although I lived much as you describe, and fully KNOW I am in the spectrum and have suffered greatly, I still want to know the day to day ins and outs. I feel that masking the “dirty laundry” so to speak, is just as bad as stereotyping autism with the most extreme ends of the spectrum. More people NEED to speak of their own lives, and the challenges. I believe there are a huge part of society that might then, and only then, recognize that they too, have lived A bit inside the spectrum.

I also disagree that no one can have financial gain by doing hard work as writing a book about their life. Anyone is entitled to write a book and it can be extremely therapeutic.! Even for those living with autism, it might just be the thing to turn one’s confidence, finances, and outlook around as well as change society misconceptions. One can put the money into an autism non profit! It’s outrageous too, that people judge someone who write a book, and assume that they are doing it for financial gain. The author has started an incredible nonprofit for Austic children, but no one seems to learn about it. That’s judgemental-the exact same way the society has judged autistic people! Austistic people can be really harsh in their judgements of others- including other autistic people, (as well of course of the NT world.) It’s extremely unpleasant to view on these threads here.

Thanks for your clarity and utmost honesty.

 

[55853]

That’s judgemental-the exact same way the society has judged autistic people! Austistic people can be really harsh in their judgements of others- including other autistic people, (as well of course of the NT world.) It’s extremely unpleasant to view on these threads here.

I could not agree more, I'm finding some really toxic viewpoints on this site and it's very off-putting. In describing how they don't meet stereotypes of the spectrum, I've seen the complete piss taken out of those that do meet that stereotype. But what I find even worse are the disgusting generalisations of "NTs" and the harassment that takes place if they join this site. I think anyone who believes people without autism must be stupid, dull, out to get you, and never straight-talking needs to reflect on themselves and on others around them. It's really not healthy to view the majority of people so negatively. I wonder if the people expressing these viewpoints are aware of what they're doing or if they really just don't care.

 

[Fridgemagnetman]

them. It's really not healthy to view the majority of people so negatively. I

My take is they don't. People know the difference.
Generalisations are useful for brevity.
In a life of ostracization venting is ok imo.

But what I find even worse are the disgusting generalisations of "NTs" and the harassment that takes place if they join this site

You've made your own generalisation here.
You've defeated your own argument.

Sometimes NTs are given what they don't want to hear imo. I don't see harassment.

But Imo, occasionally I see NTs show up, I don't see a lot of empathy.
I see please say what I want you to say bro make me feel better.

This place isn't about that.