Autism and children

[pamelaperejil]

No need to answer all the questions here. Just a jumping off point, really:

Did you also have a parent with autism? If so, how did that go? Did you learn anything from their mistakes? If you are a parent, do you consider yourself a good one? Do you think your children are negatively affected by your autism? Do they receive any positive benefits from it? What advice would you recommend to a AS parent raising NT children? What advice would you give to a NT parent raising an AS child?

Were you bullied, left out, or otherwise misunderstood as a child because of your autism? Do you think anything could have/should have been done to mitigate that? Is autism a disability, a kind of diversity, or both? Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism? Is it a civil rights issue? Or does hardship and misunderstanding just come with the territory? Should adults try to "fix" the child with autism? Or do these differences need to be tolerated or even celebrated?

Did you receive your diagnosis (if you have one) as a child or an adult? What do you actively do to try to fit in better with mainstream society? Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve?

 

[Lady Lucifer]

Did you also have a parent with autism? Yes both
If so, how did that go? They were not professionally dignosed.
Did you learn anything from their mistakes? Yep.
If you are a parent, do you consider yourself a good one? I'm not having kids. Not after my childhood...
Do you think your children are negatively affected by your autism? If I were to have children, yes
Do they receive any positive benefits from it? NA
What advice would you recommend to a AS parent raising NT children? I don't know becuase it depends on the parents' condition. (I've seen a few AS parents on this forum that make me cringe)
What advice would you give to a NT parent raising an AS child? Its gonna be a bumpy road, but early intervention is beneficial! Trust me. (I literally gave this advice yesterday)

Were you bullied, left out, or otherwise misunderstood as a child because of your autism? Yes and no. I was bullied for a wide range of reasons.
Do you think anything could have/should have been done to mitigate that? No some of it I really deserved becuase it helped me grow (nose picking for example)
Is autism a disability, a kind of diversity, or both? Depends on the indvidual. For me, I mask it so well, people don't even know....until I'm in a public place.
Me: WHAAAAAT can you speak up!!!?
Mom: There is no one else in this store other than us and the shop keeper.
Me: I can't hear you over the loud Katy Perry music!?

Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism? Depends on the person or career.
Is it a civil rights issue? Not that I know of...
Or does hardship and misunderstanding just come with the territory? Yes and no. Where I come from, yes definately. For others, they may have an understanding enviroment and the invidual may not know how to deal with themsleves
Should adults try to "fix" the child with autism? Like gentically tailor prenatally? If they want. Certain traits? Depends. Mine did and it helped me.
Or do these differences need to be tolerated or even celebrated? Depends on the person.

Did you receive your diagnosis (if you have one) as a child or an adult? I was 12 or 13
What do you actively do to try to fit in better with mainstream society? Not tell people I have AS
Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve? In a way, but I don't think its becuase of my AS.

 

[Lady Lucifer]

PS I love your questionares! Gives me something to think about.

 

[Major Tom]

I believe my father is an undiagnosed ASD person, however I didn't grow up with him. In some ways I think he would have been better, but also worse than my stepfather. I will never know though.
I have HFA and my son has Classical Autism. I think in many ways I can understand him better than my wife can because of it. The only HUGE challenge my ASD gives me regarding him is my sound sensitivity. He is very loud, and I am constantly on a state of high alert and often jumping from the sound (even when he's not home). So I guess I get some intense anxiety/stress from it, but things are getting a bit better.
I was attempted to be diagnosed as a child, but my mother refused the diagnoses. I was diagnosed officially at 37 a bit after my son was diagnosed.

 

[Progster]

Did you also have a parent with autism?

No.

What advice would you give to a NT parent raising an AS child

Take their sensory issues and other problems or concerns seriously, guide and and advise, but don't punish them for things that they genuinely can't help.

Were you bullied, left out, or otherwise misunderstood as a child because of your autism?

Yes, I was, quite a lot, especially since I wasn't diagnosed until later in life.

Do you think anything could have/should have been done to mitigate that?

An earlier diagnosis might have helped.

Is autism a disability, a kind of diversity, or both?

It can be either. In my case, as an independent adult, more of a kind of diversity, although my inability to participate in group conversations or to cope with background noise could be viewed as a disability because it affects my ability to function - other people more severely affected are more likely to view it as a disability.

Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism?

Perhaps, in some cases, but not necessarily.

Is it a civil rights issue?

Perhaps, if, for example, an autistic person is unfairly dismissed from work, or is not given accommodations in school.

Or does hardship and misunderstanding just come with the territory?

Yes, it does. If we wish to particpate in society, we need to adapt to some extent - we can't expect all of society to change to suit us because that just won't happen, though we can ask for reasonable adjustments, more tolerance and understanding.

Should adults try to "fix" the child with autism? Or do these differences need to be tolerated or even celebrated?

Parents need to help their children to find coping mechanisms to adapt to society, but not change who they are or punish them for things that they can't help. There are things that should be fixed and other things that don't need to be fixed.

Did you receive your diagnosis (if you have one) as a child or an adult?

An adult.

What do you actively do to try to fit in better with mainstream society?

I often push myself out of my comfort zone to make myself do things that I don't really want to do or that I find difficult, things I need to do to get by.

Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve?

I won't change my opinions or taste to please other people or to fit in and I won't accept a gender role - society telling me what I should like and do based on my gender. I won't do things just because "that's just how it is" or because I'm "supposed to" do it, I need to see the reason or I won't accept it.

 

[Southern Discomfort]

People who care for autistic people - because let's not forget autism is a lifelong condition and there's a lot more people than just parents who love and care for autistics - they shouldn't be trying to "fix" them. Doing this makes them no better than the obstacles people like us face. What they should be trying to fix is the problems they face, the environment around them. Would they try to get a person in a wheelchair who finds it physically painful to move their legs to walk or install a damn ramp? Some will cry, "But this is socialism at it's finest, we, the majority are being victimised because of the minorities' inability to function!" Who ever complained of a ramp? I now speak in metaphors which might be hard for some to understand but do you get where I'm coming from?

Now, this might confuse some people but it is also not just the strengths the people around the autistic individual who fail to recognise, they often fail to recognise "weaknesses" in them and doing something to "strengthen that muscle" as best possible, often coddling them.

"Johnny has problems with gross motor movements. Don't let Johnny do sports, he'll never be good at it."

"Timmy has trouble communicating. Don't like Timmy do drama, he'll never be good at it."

How can one learn to conquer or at least improve of their weaker sides of themselves if not appropriately challenged?


Is autism disabling? Well there's no one answer there, it is of course subjective to the person and also the environment they find themselves in. UK law dictates that a disability is down to whether a person has trouble doing everyday tasks, not just blanketing a condition as disabling.

 

[Mary Anne]

Did you also have a parent with autism?

• Possibly my father

If so, how did that go?

• He was unloving, unresponsive, no empathy, non communicative. I will never forgive my father, and hate him. I do not care if it was his trauma filled childhood, autism, or a combo of the two. Does not matter to me. People should not have kids if they cannot show love and empathy to their kids.

Did you learn anything from their mistakes?

• Yes, never to have kids myself. Mom has undiagnosed mental illness- possibly bi-polar and schizophrenia. Extremely abusive mentally and physically.

Were you bullied, left out, or otherwise misunderstood as a child because of your autism?

• Heavily bullied but for cultural and physical reasons- not autism.

Do you think anything could have/should have been done to mitigate that?

• Do not want to think about nor relive the past. It’s done and over.

Is autism a disability, a kind of diversity, or both?

• It can be both depending on its severity, and how the child grows up and responds and adapts to the environment of society etc.

Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism?

• I think times have changed and it’s far better to grow up with autism now due to more knowledge and better treatment /educational programs.

Should adults try to "fix" the child with autism? Or do these differences need to be tolerated or even celebrated?

• Since autism is a small minority of society, yes, parents need to prepare their Austin child to live as independently and happily as possible within this NT world. Fitting in is crucial, and coping within a larger structure of humans who are different is key. So yes, prepare the child to behave and live as comfortably as possible within the larger society is necessary. This is not forcing the child to lose their own identity! They can be and do both to live a successful life. Every autistic child should be prepared to have marketable work skills (if possible) and learn to fit in with society.

Did you receive your diagnosis (if you have one) as a child or an adult?

• No diagnosis growing up in the 1950s and sixties. My parents did not believe in taking children for any help for any reasons.

What do you actively do to try to fit in better with mainstream society?

• I fit in. I learned to fit in by trial and error. It was an absolute necessity. No one coddled me or gave me a free disability pass. No accommodations. No support groups. Sink or swim.

Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve?

• I am more open now in my 60s about some of my quirks. I explain to others, but it does no good, and falls in deaf ears. In other words, most people do not accept a person having autism if they do not exhibit the most extreme and obvious austistic signs as show by the stereotypes of low functioning autistics displayed in the media.

 

[Starfire]

@pamelaperejil Wow you asked 19 questions in your original post, that’s a lot. I’m guessing that’s why you edited it to say it wasn’t necessary to answer all the questions. I’m wondering if you’re just interested or curious to the answers, or if you need it for a university or college paper? I ask because students come here quite often with a questionnaire or survey.

They are great questions by the way! I hope I didn’t sound critical, that wasn’t my intention, but I really struggle to answer questions with one word, and not to go into to much detail. I’ll try to answer a few for you as response has been slow.

Did you also have a parent with autism?

My mother is also no doubt on the spectrum. She is medically trained, and told me that she put herself through some informal testing years ago. She didn’t go into detail but said it wasn’t something she wanted to pursue as a formal diagnosis may have hindered her career. Before she retired, she had reached the top of her field, and was responsible for a large number of staff, an annual budget in the millions and the welfare of a live in school of special needs and disabled children needing 24 hour care.

If so, how did that go?

Very badly for me. My mother was obsessed with her work, and often almost forgot she had her own children. She was generally exhausted, stressed and overwhelmed which meant she was very quick tempered and dismissive. She wasn’t tactile and was very critical of anything I said or wanted to do, but would offer no alternatives.

Did you learn anything from their mistakes?

Yes, a lot. I regularly if not daily tell my children I love them, not something I can ever recall being told. I engage in their interests and hobbies and encouraged them to try everything on offer, even if it’s something I have absolutely no interest in. I try to spend quality time with them and laugh and joke with them regularly. I try not to be critical or dismissive when what they say is nonsense, and use logic and reason rather than “don’t talk such rubbish” which is what I was told. I could write so much more on this question alone.

If you are a parent, do you consider yourself a good one?

I really try to do to be a good parent to the best of my ability. My children are aware of my diagnosis and what that means as in my strong and weak points. When I’m dead, I hope they remember me as being a good parent and trying my best, it doesn’t matter what I think about that.

Do you think your children are negatively affected by your autism?

Yes, by some aspects of it. I don’t socialise, go to parties, the cinema, the theatre, parents evenings, events with other people etc etc. However, I’m happy to pay for them to go, drive them there and back but I always sit in the car and read while waiting to pick them up. I don’t go in, they don’t ask or expect me to.

Do they receive any positive benefits from it?

Yes, they’ve had an unorthodox upbringing. They have both learn that there is always a way to do something if one puts the mind to work. Never give up halfway through, stay focused and concentrate and there is nothing you can’t achieve. I’ve let them use power tools, steer a car, take risks supervised, try alcohol (small amount) to take the thrill and mystery of the forbidden away. Just a big sniff of a glass of scotch was enough to take the allure of alcohol away. They know that the world is made up of very different people all with strengths and weaknesses and different or weird doesn’t mean bad. Again I could go on at length here.

What advice would you recommend to a AS parent raising NT children?

Don’t expect them to understand why what is logical for you, is not for them. Encourage them in everything they do, while letting them know they will be good at some things and not at others despite what school tells them about everyone being great at everything, it’s a lie. Pick your battles carefully. Accept that they can and will try to provoke you for no other reason than, because! Try to sense and recognise the signs of when an argument, drama, kick off is coming and don’t engage or try reason, it will not work until they are calm again. It is ok to say no, and mean no. Don’t send them mixed messages be straight so they know where they stand. Give them routine and guidelines on what is acceptable, you are not their friend, yet, you are their parent. Laugh and have fun with them, that’s very important. Know when to step away and let your partner take over if things escalate or are confusing, that’s not a sign of weakness, it works both ways. Try to always be fair, reasonable and honest. Teach them to be kind to animals and those weaker than themselves. Don’t forget to give them a hug or kiss, it’s easy to do if you like me, are not tactile. Privileges come with responsibility and are earned not given, they can just as easily be taken away. Home is home, not an army camp. No matter how good or bad the day is, don’t forget to tell them you love them before the light goes out, they are children and tomorrow is another day. I have again only scratched the surface here.

If anyone is still reading and hasn’t lost interest yet, you may see why I struggle to give one word answers! I hope what I wrote be be of some help to someone.

 

[Mr Allen]

Both my Parents are NT, the only known link to AS on either side of the family was my Dad's late Uncle Les, he was never formally diagnosed but he had all the classic symptoms, had no social skills, couldn't look after himself, and hated the world and everybody in it.

I also have a very distant cousin on Mum's side who is Schizophrenic.

 

[OkRad]

No need to answer all the questions here. Just a jumping off point, really:

Did you also have a parent with autism? Unsure because no one was dxed . Possibly an uncle and maybe a parent.

If so, how did that go? Did you learn anything from their mistakes? Both the people who may have it are brilliant, so yes, I learned a lot from them.

If you are a parent, do you consider yourself a good one? Do you think your children are negatively affected by your autism? Do they receive any positive benefits from it? What advice would you recommend to a AS parent raising NT children? What advice would you give to a NT parent raising an AS child? All the kids in my family "outgrow" me. This is very distressing and I never see it coming. I recall when my niece outgrew me and now she hates me. We get along so great, doing kids stuff and having fun. Then they hit about 14 (the age when things went south for me) and they develop. I never did. From 14 on, I had to look around and intellectually force my way to behave like my peers but never pulled it off. So when they hit about 16, they have no idea what to think. I am taking about Kierkegaard, but they now I am still like 14 in many ways. So since they grew up, they think I can,too. They think it's a choice. It kills me because most of the kids I was so close to and then.....bam.

Were you bullied, left out, or otherwise misunderstood as a child because of your autism? Yes, but mostly from family. I stayed away from people as a child and was homeschooled to avoid bullying. When I branched out, I was hit a lot by partners who were going to teach me how to behave. I confuse people a lot because I am small and skinny and seem to be childlike but I am your typical Aspie with loads of intellectualizing and understanding which makes people crazy. If you are tall and strong, you can get away with it. If you are short and little and you infuriate people, you WILL get hit.

Do you think anything could have/should have been done to mitigate that? Yes. If I had had the genetic Karytyping that I had as an adult which revealed the genetic duplication. Then there would be none of all that "woo-woo" garbage I endured about Oh, you are mental. Oh, you are developementally disabled. Oh, you are "special" . Oh, you are actually smart. Oh, We have no idea what in the heck is wrong with you! What my family endured was as bizarre and weird as those poor women in the 1920s who actually got the diagnosis of Electra Complex! Or lobotomized.


Is autism a disability, a kind of diversity, or both? Not in its own right. It's disabling when there are things along with it, like not being able to eat or sleep or talk. Not talking is not disabling , actually. Well, I am conflicted on that one. It can be if you cannot communicate, but if you have helpers, maybe not so. But I think autism by itself is a gift if there are not other things along with it. Just my thought.

Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism? No. I think people see it as a good thing until the other things hit. I think parents hold their breath to see. If kids meltdown and can't sleep, etc., then they certainly will have a hard time working through that to help get to the massive intelligence. Autism seems to be cruel in that there is a great deal of intelligence, but often buried under pure torture of never letting the kid sleep, eat, or communicate for so many. Like a cruel master who is jealous of the gifts of his servant so cute off both his legs so he will never be able to use his gifts. That is just my thought, and for those who are able to use your gifts, you are amazing.

Is it a civil rights issue? No more than anyone else. Everyone should be treated fairly.

Or does hardship and misunderstanding just come with the territory? Hmmm. I can't answer this because some people with Autism do not suffer and other suffer tremendously.

Should adults try to "fix" the child with autism? Or do these differences need to be tolerated or even celebrated? They should try to fix disorders associated with it. But not it. It's not the problem.

Did you receive your diagnosis (if you have one) as a child or an adult? Both

What do you actively do to try to fit in better with mainstream society? I don't. I stay away or just suck up odd looks. I find that if I just am kind and treat people how I would like to be treated, even if I am a little odd or odder on some days than others, I find there are people who accept me. All people want to feel good about themselves and if you care kind to people, they will be kind to you.

Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve? I no longer try to change anything because I put so much effort into that for so many years and it only hurt me and never changed a thing. If I had it to over again, I never would have ever tried to change anything. Very damaging experience.

 

[pamelaperejil]

@pamelaperejil Wow you asked 19 questions in your original post, that’s a lot. I’m guessing that’s why you edited it to say it wasn’t necessary to answer all the questions. I’m wondering if you’re just interested or curious to the answers, or if you need it for a university or college paper? I ask because students come here quite often with a questionnaire or survey.

I'm not writing a paper. I'm not a student.

I'll answer the questions myself in a minute.

 

[pamelaperejil]

Not trying to bump my own thread, I just promised I would answer the questions myself.

Did you also have a parent with autism? If so, how did that go?

I suspect my dad has it, though I didn't know about Asperger's during my childhood. He was odd, had trouble keeping a job and getting along with people, and didn't seem to know how to relate to his family as human beings. It went badly, I guess, though I don't think I gave him enough credit.

Did you learn anything from their mistakes?

I learned that you have to nurture relationships, not just take people for granted.

What advice would you recommend to a AS parent raising NT children? What advice would you give to a NT parent raising an AS child?

To both I would say, make an effort to be understanding of one another, and pursue therapy.

Were you bullied, left out, or otherwise misunderstood as a child because of your autism?

Not 100% sure I have autism, though I certainly have some traits. I wish I had had more help/encouragement socializing. I wish that my "oddness" had been addressed rather than ignored.

Do you think anything could have/should have been done to mitigate that?

I'm really torn on this one. My second grade teacher told the other students I was retarded. Eventually, I went to a special math/science school, and my social flaws tolerated, even encouraged by my parents. It should have been obvious that something was wrong and I wish someone had done something to help, but I wouldn't go so far as to say my peers "owed" me more tolerance or understanding than they gave me. I almost want to say I got too much tolerance. My grades and general submissiveness got me a pass on behavior that would not otherwise have been accepted. I don't mean to say I should have been shamed or condemned, but someone should have said: look, that's unacceptable. I'm thinking in particular about locking myself in the bathroom to avoid spending time with other people.

Is autism a disability, a kind of diversity, or both?

Personally, I like some of the autistic traits I have. If I could advise my younger self, knowing what I know now, I might have made much better choices and met with far greater success in life. But life's not over yet. I think the problem was in not knowing how to capitolise on strengths and manage weaknesses. There are things I do exceptionally well because of my autistic side. Both admirable strengths and debilitating weaknesses, so i'm going to have to say, "both".

Are NTs failing to understand, diagnose, and recognize the strengths of children with autism, to the detriment of children with autism?

I think there should be special screening in school. I think girls, in particular, are flying under the radar.

Is it a civil rights issue? Or does hardship and misunderstanding just come with the territory? Should adults try to "fix" the child with autism? Or do these differences need to be tolerated or even celebrated?

Undecided on this point. There's a lot to be said for tolerance and diversity, and a lot to be said for dealing with the world the way it is.

Did you receive your diagnosis (if you have one) as a child or an adult?

No dx yet. On online tests say I have some neurotypical and some aspie traits.

What do you actively do to try to fit in better with mainstream society?

I try to dial down my perfectionism at work.

Is there anything that you refuse to do to fit in/differences about yourself that you try to preserve?

I'm still trying to find the balance between being socially acceptable and being myself/"honest". My directness and transparency is one of the things I like best about myself, but it can be a bit much for some people.

 

[the_tortoise]

Is autism a disability, a kind of diversity, or both?

Both. Both at the same time and in the same person and not dependent on context but inherently both.

I am completely fed up with people who insist it’s one or the other and can’t be both. SO.FREAKING.FED.UP.

 

[Chris_uwd]

I read this whole post before realising it was a year old.
Just want to say thank you to everyone who replied, as NT parent to an ND child is been really helpful to read your thoughts.