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

[SunnyDay16]

Because I understood a sentence you said and agreed with you, as a disabled person myself...you say and feel something I do not understand! I have not talked “down” to you. I said nothing of your character, or of your abilities. I do not know what you have “been through” but in my world, people who show interest, compassion, and empathy, and who are honest are really trying to understand one another. Sorry if that is not what you understood, as it’s my intention to be honest and compassionate. I DO agree with everything you said in that specific paragraph and that is a positive thing. I can certainly see now that the disconnect in communication style might be something I am not prepared for. I am disabled, and work with people living with mental and intellectual challenges. I have never had this sort of response before!

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.

 

[Ames]

“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.”

I responded then with my thoughts,
“Autistic people NEED to be much more prominent within the autism field as researchers, therapists, and support specialists. There NEEDS to be a change,” and there are autistic disability activists and outspoken individuals who criticise the system, there are virtually no autistic indiviuals at this time bringing about change to the care/coping system for low functioning children.”

So I do ask every one here, why hasn’t it happened?[/QUOTE]

"No autistic adult has ever been interested in spending time with my autistic son." How many were invited? How many autistic adults has she invited into her home after successfully explaining her situation and communicating what she wants from them? Was she willing to compensate them for their time?

I can only speculate and answer for myself, but I think this would work best for people fall into a specific age group and on a specific portion of the spectrum. For those of us who were late-diagnosed and are over a certain age, we are likely still struggling with these things ourselves. To this day, I lack the money, communication skills, focus, and maybe imagination to minimize my symptoms through controlling my environment and creating better systems. After living/passing as NT (just "weird") most of my life, all I can do is look back at my childhood and wonder what may have helped me. I know this will sound incredibly bitter, but...for people in my situation, we are just trying to survive ourselves, so helping someone else who has an entire family, a community to support them, a team of therapists to work with them 40 hours a week (?!), a mother who wrote a book, etc.... it is a little hard to look at that and hear, "They need so much more!" when we got nothing as children and get nothing now as adults. (Sorry for sounding bitter. Just trying to think through why this hasn't materialized.)

That said, I do think it would be a great idea to have ASD adults help parents. However, because every person is different, an observant parent would know more about what issues a child has than a stranger, even if that stranger is on the spectrum. (I hate balloons, but that doesn't mean everyone on the spectrum hates balloons. What a shame if I went into the home of a balloon-loving kid and said, "NO BALLOONS! People with ASD HATE balloons!!") I guess my point is that while having an ASD adult to talk with may be helpful, the parents will always be the primary observers - they know their kids best. To be honest, I'm not certain having an ASD adult around will bring this mother the insight she hopes to gain.

 

[Fridgemagnetman]

NTs seem to be consistently chastised for promoting “destructive science,” for searching “for a cure”, for joining the “wrong organizations,” for spreading the “stereotypes”, for being “bad parents,” for donating money to “bad autism groups,”

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.

and for expressing their views that they were human and just did the best they can

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.

 

[George Newman]

Sometimes there is a difference in interpretation.

You have said "complain"

I would perhaps said that these issues re "stated"

Often an autistic misunderstanding between the autistic can be between what s meant and what is heard.

So maybe there are many reasons why autistic people aren't more involved.
Being marginalised, socially awkward are two further.

Making a statement that is then received as a complaint (ie heard as such) can be Central to the whole experience.

Where are the NT lining up to hear the autistic perspective?

Will we step forward to be marginalised further by thosealreay involved who are better at putting ideas forward more consistently than we may be?
Or do we survive as best we can.

Too many spoons! Look up spoon theory

We survive as best we can.

 

[tducey]

It's different for all parents. I think many of us here are high-functioning so there wasn't much issue in raising us but Autism affects people severely and I can see a parent having issues with raising a child.

 

[Gracey]

If a high functioning adult went into this women’s home to help her with her son, she’d expect her son to attain the levels of independence of the helper.
I’m guessing.

If this adult can do it, then so can her son?

I can’t decide if that’s damaging or helpful.
*I haven’t read the book*
She’s made a shed load of money describing her disappointment, bitterness and feeling cheated. Allegedly making a buck off her sons back
There’s compensation for her dashed expectations in monetary form right there.

Has her son ever said “you know what mum, I wish I was like you and dad and could go out and get a job?”

Edited to add - I already feel like I want to protect this young man.
From his own mother!

 

[Starfire]

If a high functioning adult went into this women’s home to help her with her son, she’d expect her son to attain the levels of independence of the helper.
I’m guessing.

If this adult can do it, then so can her son?

I can’t decide if that’s damaging or helpful.
*I haven’t read the book*
She’s made a shed load of money describing her disappointment, bitterness and feeling cheated. Allegedly making a buck off her sons back
There’s compensation for her dashed expectations in monetary form right there.

Has her son ever said “you know what mum, I wish I was like you and dad and could go out and get a job?”

Edited to add - I already feel like I want to protect this young man.
From his own mother!

That’s an interesting take on this, but I see it differently. I think what’s she’s done is very smart, she has written a book that she knew people from both sides would buy in order to either criticise her or agree with her, either way it will sell. Her son is unlikely to read it and if he did he most likely would be indifferent to the contents.

So she makes money, I don’t think she will be spending it on fancy clothes or cars or jewellery, I think much of it will go towards the cost of her sons care. Also she may well be thinking now, about what will happen to him when she’s not here anymore. Some of it most probably will go into a trust for his future. Given that her opportunity to work has been diminished how does she pay for care, a house for him to live in, a car to transport him, his food etc?

I can also understand her feelings of disappointment, sadness and feeling cheated.
She’s not however dwelling on those, she’s being proactive and pragmatic and telling it how it is for her, as I did yesterday. There is no glamour or sexiness in living with an autistic child, it’s draining and exhausting much of the time, but people don’t want to hear about your ‘gift’ or ‘special’ child described in the reality of day to day life.

I don’t think this boy is in need of anyone else protecting him, he has a smart and loving mum who’s thick skinned enough to provide for his future, by taking a kicking over this book.


“Our kids are innocent travelers with a disability that makes the world hard to navigate,” she says. “If they are flapping, own it. Don’t feel ashamed of it. Get them out into the real world. Don’t keep them at home because you’re embarrassed. The only way to crystallize skills is to practice them in the real world.”

 

[Ezra]

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.

 

[Starfire]

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.

So are you suggesting that the mother who wrote the book wouldn’t be equally devastated at the death of her child because she’s an “upper class career woman?” Also while you are of course entitled to your opinion, unless you have, are responsible for or live with an autistic child, no amount of YouTube videos will ever give give you an understanding of the reality. When you’ve had enough of YouTube or become bored with it, you can switch it off!

 

[SunnyDay16]

So are you suggesting that the mother who wrote the book wouldn’t be equally devastated at the death of her child because she’s an “upper class career woman?” Also while you are of course entitled to your opinion, unless you have, are responsible for or live with an autistic child, no amount of YouTube videos will ever give give you an understanding of the reality. When you’ve had enough of YouTube or become bored with it, you can switch it off!

I don't feel she was trying to insinuate that.

 

[Mary Terry]

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.

 

[Starfire]

I don't feel she was trying to insinuate that.

If by she you mean Ezra the profile says 17 year old male. If not I’m not sure what you mean by ‘she’.

 

[Ezra]

So are you suggesting that the mother who wrote the book wouldn’t be equally devastated at the death of her child because she’s an “upper class career woman?” Also while you are of course entitled to your opinion, unless you have, are responsible for or live with an autistic child, no amount of YouTube videos will ever give give you an understanding of the reality. When you’ve had enough of YouTube or become bored with it, you can switch it off!

What I am saying is maybe she can count herself fortunate that her kid is alive. That while she has it tough, maybe it's not so bad she would want to lose her burden the way Kreed's mom did. It does seem like the moms I've seen in Autism Speaks videos and this mom seem mostly inconvenienced by having an autistic kid spoil their lifestyle.

As for what it's like to raise an autistic kid, I am one. I was diagnosed severely autistic and am still moderate to severe. I know what my mom has had to go through, goes through and will have to go through in the future. And while I know she's not overjoyed with having a significantly autistic kid, she would never come right out and say so.

 

[SunnyDay16]

If by she you mean Ezra the profile says 17 year old male. If not I’m not sure what you mean by ‘she’.

Oh okay. I thought that he was a she.

 

[Ezra]

I was wrong in my posts about this. I have trouble reading and processing sometimes. I thought at first this was one of those "having an autistic kid ruined my life" things. But she sounds like a good mom and not like that. I am not sure why she is getting backlash from what I read (and finally understood). Usually I give myself more time to process instead of jumping the gun. Sorry.

 

[Starfire]

I was wrong in my posts about this. I have trouble reading and processing sometimes. I thought at first this was one of those "having an autistic kid ruined my life" things. But she sounds like a good mom and not like that. I am not sure why she is getting backlash from what I read (and finally understood). Usually I give myself more time to process instead of jumping the gun. Sorry.

Thank you so much for taking the time to look at this again and give yourself time to process the information. It’s very honest of you to admit that you may have been wrong earlier, it would have been far easier to just ignore the thread and wait for it to disappear.
I think that’s very admirable of you and you have my respect for that.

I totally agree with your conclusion, I think she’s doing the best she can in a difficult situation, when she could easily have kept her high paying lawyer job and paid someone else to clean the poo off the wall, but she didn’t.

She’s also as you can see, doing much work for the community and trying to improve the lives of us all, NT and ND.

 

[55853]

I was wrong in my posts about this. I have trouble reading and processing sometimes. I thought at first this was one of those "having an autistic kid ruined my life" things. But she sounds like a good mom and not like that. I am not sure why she is getting backlash from what I read (and finally understood). Usually I give myself more time to process instead of jumping the gun. Sorry.

I'd imagine the backlash is for that reason exactly - people "jumping the gun" without seeing the whole story. I'm not talking about you here, but I see some people are unfortunately incredibly suspicious and frustrated with "NTs", and I think they'd be even more likely to do this as soon as they see someone without autism say something negative about someone with autism.

 

[Starfire]

I'd imagine the backlash is for that reason exactly - people "jumping the gun" without seeing the whole story. I'm not talking about you here, but I see some people are unfortunately incredibly suspicious and frustrated with "NTs", and I think they'd be even more likely to do this as soon as they see someone without autism say something negative about someone with autism.

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.

I’m perhaps in a slightly different position in that I have one foot in both camps. I have ASD and my eldest has ASD. My wife and my youngest do not.

 

[Ezra]

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.

I’m perhaps in a slightly different position in that I have one foot in both camps. I have ASD and my eldest has ASD. My wife and my youngest do not.

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.

 

[55853]

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.

I’m perhaps in a slightly different position in that I have one foot in both camps. I have ASD and my eldest has ASD. My wife and my youngest do not.

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.