Why would some people be ashmed to have an Aut spectrum baby

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And sadly many parents who have severely disabled kids have had to file bankruptcy to help their kids who are still adults that need support 24/7. It's a frightening thought, having no money and even more frightening about who will care for their child when the parents are too ill or old or, or after they are gone. And I also wish Rainman had never existed.

Holy crap, yes.

It seems to me that the problem is not really raising a disabled child, but knowing that raising a disabled child is possible, and that the child can be really, truly happy, and that you'll survive it and he'll survive it and things will be OK...

People who are NTs in an NT world, never really interacting with disabled people, don't know what it's like. That's often said to mean "You don't know how really terrible it is", but that's not what I mean here; I mean that they have all these TV stereotypes in their heads, all these fears that may never come to pass, all the ideas about what a child should be; and they don't know, really, what the future holds with a disabled child. That uncertainty scares them more than anything, I think.

If we could get the word out about what autism is really like--everything from the geeky guy with the PhD to the adult autie who's living with his parents, communicating with picture cards, and learning how to help with the housework--then it wouldn't be so scary anymore. They'd know what to expect, or at least, know to expect anything on a wide range, and know that it's all something that's possible to deal with and still have a real, if different, family.

The big scary thing seems to be "What happens to my child when I'm gone?" and I agree that this is a big problem. The vast majority of autistics will not need 24/7 care as adults; but many of them will end up in group homes or nursing homes (etc.) anyway because the kind of intermittent support they need isn't available. That needs to change. There need to be more choices between "completely independent" and "nursing home". Adults need to be given education about how to live on their own, do things for themselves--IEPs should not end at age 21 with nothing to take over.

Considering that we have an increasingly large disabled population, we need to start offering more and different services for people, as well as employing them and including them in whatever they happen to want to do. There also needs to be more quality control, especially with people who live in a 24 hour care facility of some sort, because these are the most vulnerable to abuse and there need to be more checks and balances--at the very least, the sort of background checks they do before adoption. Oh, and stop paying them peanuts and skimping on the training. You get what you pay for.

If we could solve those problems at least partially, then it wouldn't be so frightening to have an autistic child, and fewer people would be ashamed of the ones they had.

Their only named example is Rainman. There is Forrest Gump.

That's roughly how I came into this, though I did understand that Rainman wasn't overly accurate. Plus, am I the only one that didn't find Raymond Babbitt's lot so bad, besides having a bit of a chickenshit brother? If anything I got from it was a bit of a cautionary tale of "don't be doing institutions because they are a self perpetuating trap".

But yeah, although I knew something was up and me and my wife even mentioned autism prior (he had enough "classical" sensory quirks that we suspected it) it was tough reconciling the diagnosis with some of the things about him. For example part of the testing was this little toy mechanical bunny connected, via an 18" wire, to pedal on a plastic base. The evaluator puts down the bunny in front of the my 2 1/2 year-old son and pushes the pedal with her had. The bunny jumps and my son's happy. The evaluator then leaves him to try figure it out, to test his cause and effect skills. He picks up the base and instead of pushing the pedal he turns the base over, looks around in side and finds the push-switch inside and pushes that to make the bunny move.

For context this was shortly after that Dilbert animated cartoon came out about a young Dilbert's mother getting the news that her son had "The Knack".

Trying to reconcile that with my limited mental map of "autism" was tough. Really I had no idea. I didn't even realize just how on the spectrum a 30ish year-old friend was, he was just an "odd duck".

See, if we could just connect the "odd duck" people to "autism" in the public mind, maybe it wouldn't be so scary anymore, and parents wouldn't be so desperate, and kids could grow up with less pressure to be normal and more help just learning the world...

It's something I try to work on. Starting with my friend. Last we he was in town and we were talking about him moving in next year with his first girl friend (he is mid-30s now). I mentioned that it was good that she had some understanding of where he was coming from because she has an autistic nephew. He really squirmed when I said that so I asked him if that bothered him, me using the autistic word. He straight out said "I'm not disabled". I went on to explain that is NOT what I intended by that, I was just talking about the different way he thought. "The superior way" he corrected. He knows there is a difference, he's got some idea about how and how much, and he's pretty lighthearted about it. From a recent email "I know giving and receiving gifts is an important Earthling custom, but for me it's no big deal."

We talked some more, about ASC vs ASD and the problems with the terminology of the later. We talked about my son. My friend's been working out of town for over a year and hasn't seem my son in a quite a while, so there's been some maturing there. He seemed to come away with a lot better handle on things.

If my parents were going to be the kind of people who were worried that I was not going to be the kind of "healthy" baby that they dreamed of...I hope they would abort me . Honestly, my life was hell because I could never live up to my parents expectations and I would have preferred not having to go through that .

As to being a parent. I chose not to breed because I was a miserably unhappy person and thought it was because "something" was wrong with my genes...depression,anxiety...long before I knew I was an aspie . I did not want to inflict all that pain on another person so it seemed illogical to have a child .

I wonder how I would have felt if I had had a child like the NT's I went to school with...to me, they were lazy, superficial, intellectually incurious and dull (yes, I realize that not all NT's are like this but that was my view from the outside and none of them were interested in my knowing them any better). They were loud and in my eyes "over emotional" , interested in stupid things like what they wore or what every one thought of them . Would I be able to relate to them any better then my (adopted NT) parents related to me or like them any more ? I hope that I would be but I can't honestly say that I would so I am glad that I stuck with cats . I loved being around the LFA that I used to work with but a "classic NT kid"...certainly would challenge my patience .

QFT.

it seems there is a lot more choice in the UK for support,some people live on their own,but get direct payment to pay for whoever they want to support them for some time in the week,some may live in sheltered housing,which is where they have a warden to come to them when they press the alarm,some dont get support at home but go to a day centre,some live in group homes or residential homes-but institutions for LDers/DDers are all being shut down because even the most profoundly disabled can be adapted for in a community based residential home,though they didnt think it all through as am and other ex institutioners with high complex needs are not compatible with community [residential/being around many other people] living.

even though an organisation called CSCI checks up and goes through all the reports,the abuse is very common,even if those who run homes or services say it isn't [then again,that would be the same for abuse in any type of service,such as schools],am have had it in every single residential home [and institution],it was all hidden away until the NAS outreach staff started to come here to give specialist support and advocate,they didnt let the council get away with it and had wanted to get police involved,council had blamed all the abuse on am for having autism.

also,[sorry to keep using them as example] this council [trafford] are very bad with what is required for people to become support staff even though this is a 24/7 res. for multiple disabilities and all classed as challenging,one of the managers was recently suspended for giving her two children jobs here-they had no experience-which the managers ask of other people,she gave them extra induction time into training,instead of the same as the other staff,and they are not nice people-manager got suspended and moved to another job in council,and one of the children was removed from working for council,though her other child still works here.
and they make the home staff go on regular courses for training,but then they go and get rubbish agency staff working with the downstairs residents-who have no training in their needs and they sit and watch sky all day letting the regular staff do everything.
really dont know how they get away with it.


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ShadesOfMe,
am do not like the idea of it either,but it is a choice for the parent to abort a disabled baby,
as they are the ones who will have to take care of it.
am think so many disabled people-whether profound,severe,mod, or mild- can have a good quality of life with the right support,understanding and adaptions but wouldnt take that choice away from parents.
am grew up being treated as a burden on family,so do not like idea of parents knowingly having a baby
if they have some sort of disability-when they are definitely not going to cope with their child,no disabled child should be regretted as if they were born to make everyones life hell,there should be better adoption chances available and the choice of abortion.

You know i ask that question also... the other day i was talking to a mother who has a son with add and another with adhd, but the son with adhd she thinks may be on the spectrum, so many red flags, waiting for the neurologist to check him out. I asked her, what if hes on the spectrum, she said hes still him, and ill love him no matter what, doesnt matter to me if hes autistic as long i can get him as many services offered and help him be happy, isn't that all that matters? I just smiled. My bf stills talks about children haha, and hes noticing some ppl close to him have some traits, and i told him if we did have children, theres still that possibility we might have an autistic child, and hes like doesnt matter to me. I asked him what if its severe? never talks, meaning never saying daddy or mommy, need for 247 supervision, etc... He just said, then so be it, as long as i can make sure that, that child is flappy happy 24/7 if thats the case, and healthy, thats all i would want. Which i think is great, he already falls in love with every severe autie we meet lol.

Anyways everybody has this certian expectation of their child when its born, to be raised to an adult, so they go to college, or go into a career, get married and have a family of their own, but the thing is... its not always how it works, and sometimes god has other plans, and some people refuse to believe that and would do anything to make sure they have that perfect child.

A lot of people also don't know that autism is not a death sentence, some just see autism as in an institution, or group home, thats why we should have more adult advocates to prove people that autism isn't a dead end, its just a different path or way of life. Different is what this society lives on, different cultures, different languages, different personalities, different jobs. Sometimes even within this strict you gotta do this or that to be accepted society, difference lives on and will always. So all people read is about children with autism, and how ppl need a cure, a lot of people are not reading the stories of how some of these adults today were just like those children and are doing something with their lives, despite early intervention. That goes to show ya that anything is possible, yet some people still think if we abort it now, the problem will just go away. Now what basically is being done is your ignoring it altogether and instead of seeing it as a baby with potential, you see it as a baby whos going no where fast, which is so uncompletely true. Maybe at age 3, that baby is labelled severe, prone to institutionized, but that won't always be the case at age 18 lets say.

It'll always be up to parents choice, yes, but some parents are getting educated that autism is bad, is a disease and needs to be cured of. I remember one parent saying "wow before this board i didnt even know autistics could even type"! That goes to show you that some even today with all the awareness aren't getting all the information. What happened if we advocated more and put more awareness on what adults with autism are doing today, maybe itll change a lot of peoples minds... ITs like a quote of mine, "you never know until you try, how you can change this world, it only takes one person to make a difference"

So shadesofme, i totally understand where your coming from with that question.

Lot of people want a "normal" baby. The want their kid to grow up and have no difficulty and be able to live a independent life without struggle and having to work harder than everyone else. And I bet it's also because they are more work than normal kids.


But another thing I notice is, when a child does turn out to have a disability, they keep it because they love it too much. They don't get rid of it.

My mother for one wanted a normal baby, she wanted it to be healthy. She had me and I was very sick at birth and then I was healthy and then at seven months, things started to go wrong. I kept getting ear infections and fevers and then at 12 months I lost my hearing and then later on I stopped talking completely which was the babbling. I was very silent and didn't make any facial expressions or laughed. All I did was cried. But my parents still kept me. They didn't throw me out by putting me in institution or putting me up for an adoption. Instead they fought hard and my mother did most of the work. All my dad did was played with me and took my brothers and I out, took me to some of my appointments and to my games and practice. He also talked with my shrink too when he take me to go see her and that was how he got discovered he has ADHD because she picked up on his symptoms. He was never officially diagnosed.
I was a lot of work but my parents kept me because they loved me too much and I was their child. They wanted me to be independent as possible by the time I'm an adult so my mother worked with me and struggled to find me help. Some parents can't handle having a special needs child. I knew a girl with DS in my high school and she lived in a group home because her parents couldn't handle her.
I was just lucky because some parents do keep their kids but don't bother working with them or helping them because it's too much or they can't afford the therapies and there is no one to help them.

Sounds like a wonderful family.

The thing is he has the same issue as I later find myself to have he has nothing particularly disabling infact he retains more knowledge then I usually do. I am completing college last I heard of him he was going to a trade school in which he would do lab work for hospitals. While I mean no disrespect for the job its not my cup of tea and according to him it wasn't either but the label disabled him and he chose to take a safer route. In the end it was not his condition or abilities holding him back its the perceived diagnosis.

Hearing about this kind of situation infuriates me. Needing to consider a disability when planning out the future is one thing. Letting your child's diagnosis itself dictate his life is quite another. A label doesn't keep someone from being able to attend college. Lack of accommodations and low expectations does that. Talk about a self-fulfilling prophecy.

well really what pisses me off about the whole thing is I don't use accomodations at private college (before the one I am at now) nor the online college because I overperform. Now I'm not saying I know everything about my friend but I believe hes at the same level the main difference between us being motivation. I wouldn't be suprised to learn that he tries to go for Social Security Disability while I acknowledge (though to be honest I've never witnessed Autism or an ASD that inhibits the person that much that they cannot participate in normal life) that it could be a disability nothing about Asperger's disabled him the shifted blame and thought of what the disorder "could be" as opposed to what it is disabled him.

what about disabled NTs? do they not count?

Holy f**** s*** before my parents knew much about my condition, they thought I could benefit from watching that movie..... All I did was fight back hatred and rage, and run to my room and cry when it was done.

Now on to disabled children. My parents find me as an AS person, even when they first found out the diagnosis, a lot easier to care for than my 13 yold brother. He is missing a lot of grey matter that he just wasn't born with, and more importantly, the bridge that connects the two halfs of the brain. Doctors figured he would be dead by 6 months, or in a wheelchair being vegetative his whole life. Reality is, he is some form of a medical miracle, because he is more normal socially than I am, and is in school, but because of how much he is missing, he lives in a very distorted world, and due to his past, only knows two emotions, contentment, and hatred. He thinks he will be able to be like me, and try to become someone working in the video game industry, even though he pretty much lets the SpEd teachers do his work for him, and is several years behind, and uses the excuse of "its not possible for me to be that smart" as a reason not to attempt any work. He also has a super rare condition (which I have, but much milder) called DBA (diamond blackfan anemia) which prevents him from making any red blood cells, so he has blood transfusions every 3 weeks (thankfully its not that bad for me, however, I could end up needing the transfusions someday, but thats very unlikely), plus because of the transfusions, he needs to be on a medicine callled dysferral which removes iron from his blood that he gets an excess of because of the transfusions. He hates to take this medicine, but if he didn't, he would die a very horrible painful death from iron poisoning. On top of that, because of his numerous things wrong with him, it is impossible to diagnose half of the crap thats wrong with him due to so many possibilities of what all his conditions could be. For the DBA, last time I heard, there was about 600 world wide, and 600 is not a typo either. And my parents would do anything for either of us, even though it just about killed them when they found out about all the conditions wrong with my brother. The fact that they still did everything they could to make sure we had a good life, that is called love. However, due to complications with family situations, and my mom being an idiot and not letting my dad get me diagnosed till she left him and he remarried a much better woman, I didn't get the help I needed till much later in life. My step mom is more of a mother to both of us than my mother was ever capable of, and my mother is probably on the spectrum, but she was never willing to ever find out any of that stuff about herself let alone get help or help her children, she loves them, but couldn't bare it... plus a whole bunch of other twisted things about her that I'm not going to get into. But the fact that my dad and step mom have done everything they possibly could to get us both the help we needed, while raising 3 other kids, is called love, and that is the bond that allows anything to happen. Some people can't handle the shock of a disabled child as well as others, and meltdown worse than an autie is generally capable of.