Proud of my son's Autism.

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Hi,
I really quite enjoyed reading your post and admire your honesty. I'm not sure if you are a parent yourself? just wanted to explain something from my perspective as a parent.

With a child with ASD the process we go through is phases. Initially the process of denial, followed by assessments, planning and then once we got the diagnosis for our daughter a process of therapy and lifestyle changes (and going alone without friends or family).

The grieving process if it existed for us was not because of our daughter, deep down we only want her to be happy and loved. The anxiety we have is that we will not live forever and be there when she is older. I want nothing else than to make sure she has the necessary skills to survive in this world, this is our responsibility and to some extent our duty of care.

We create a world at home that is soft and comfortable for her, but the world waiting for her is not so forgiving or understanding. My greatest bitterness is the total lack of indifference and arrogance from my immediate family, the people who should be most understanding are in the end the ones who offer the least help.

I don't think trying to help kids "function" better is a bad thing. There are biomedical interventions that HELP kids function. Often children are lacking certain vitamins and minerals and when they get the nutrients they need their body functions better, plain and simple. Add some good therapies (social skills training, speech etc.) that give children "skills" they need in life. This is all good stuff.

Most certainly making sure kids get the proper balance of nutrients can help their functioning - but that applies to neurotypical kids just as much as to aspies and auties. Autism Speaks advocates "correcting" things that aren't problems in the first place, trying to force people on the spectrum to behave as if they were neurotypical - kind of as if kids with blue eyes and blonde hair needed to be "corrected" with hair dye and eye surgery.

Proud to be an aspie Momma to 2 aspie children! Equally proud of 2 "NT" kiddos! Celebrating neurodiversity in all forms and challenges in our home, everything that makes us "us".

I could not agree more. There is no doubt that helping someone to function better in the NT world is not bad, but according to autism speaks, autism needs to be cured. I do not want to be cured. Sure I need help and support to enable me to function in the real world. People who are Deaf need help to interact with the wider community, flashing smoke alarms and the like, but most of them do not want to be cured. They are more than happy to be who they are. Providing supports to enable a child to live a more productive life is one thing, changing the underlying nature of the child, to make them normal is not something I will ever endorse. I do not see what is wrong with my having obsessive interests. In fact I find it incredibly sad that other people are not able to focus on something with the same degree of intensity as I do. But to many people this is something that is flawed in me and needs to be fixed. WHY it is not impacting on you or other people. It is as though they are jealous that they cannot operate as I do, and so they need to take that away from me.

Sure I need help and support at times, but I also happy being me. And being me is not something that I should be made to be ashamed of and nor do I need fixing or curing!! If anythying the NT world needs fixing and curing for not knowing how to be autistic!! !! !

I wouldn't say that I'm proud of my son's Autism; it's not as though he's made some great achievement through sustained effort. However I am not ashamed of the fact that he has Autism either. It's quite obvious to the untrained eye that my son is "different" and when we're out and about, he does get some stares(mostly adults who have no manners) and even a few questions from children(who are genuinely inquisitive). It's kind of hard to ignore a child who says nothing but, "Eeeee" and is flapping his hands or has his entire hand shoved in his mouth. I can see where this might make others feel a bit uncomfortable, but that's where we, as parents, come in. If the CDC's numbers are correct, then Autism effects 1 out of every 110 people, therefore seeing a child like mine out in public should be a fairly common occurrence and yet it isn't. Why is that? Are people embarrassed by their own child's odd behaviors, are we overly concerned with making NTs uncomfortable?

My son also has Down Syndrome. the statistics on Down Syndrome are 1 in every 800 live births, so that would make it considerably less common than Autism. I see more children with Down Syndrome out in the community than I do children with clearly visible Autistic stimming behaviors.

I don't want to be "cured" either :p

I wouldn't change my kids brains if I were a neuro-electrician, ha ha! and could rewire the whole thing.

We do, however use supplements, natural stuff and a wonderful, healthy diet free of things that we found cause unwanted results.

I don't want to "defeat autism" but I'd like to work on defeating that attitude!

Proud of the autism in this house. For every area of what some would call "weakness" is an increadibly gifted area of strength.

I'm proud of how genuine our souls are as we aspies in this house share a deeper look at life, I beleive the world needs that.

Still, my heart goes out to other parents who have a child who has severe issues and are going through such a hard time. My prayer is for you to find cures to the specific problems for your child who happens to have unique brain wiring. I understand, as a parent who has gone through children being nonverbal, how you would want to cure a child of feeling locked in themselves as they cry out to you with only their eyes, their actions.

Even in severe situations I believe, and have seen and experienced beautiful, wonderful blessings that otherwise wouldn't be had.

Maybe proud isn't quite the right word as I almost associate that with arrogance. Maybe a little closer to how I feel is honored.

Yes, honored to be an aspie mom to 2 aspie kids. There, I said it.

Most of the increase in people on the spectrum is coming in at the mild end, like asperger's. It is hard to describe it as mild, as it is not always that way, but the simple reality is that the vast majority of people with autism are not low functioning and those that are, are not supported to be who they are. What they do in terms of stimming is seen as something to be ashamed off and so they do all they can to stop it and often create more potent behavioural problems along the way. Well that is my opinion of it anyway. Sure some stims are not the best, but we need to be guided to more acceptable ones and not stopped from doing any at all. I know of a parent who successfully taught her child to not flap her hands, but to flap a finger by her side. And it worked. The child could do that, what they could do was to not stim at all. Stopping the stimming often causes huge behavioural problems and yet that is often what is encouraged, and then they see the behavoural problems as something totally different. But all behaviour has a reason behind it and looking for those causes rather than simply trying to stop it is the answer.

I think it is GREAT that you are proud of your son. He is a lucky kid. Now, that being said, I see no reason to be proud of his autism. That's...illogical. It would be like having a neurotypical child and being proud of him for being "normal". He plays violin VERY well. That is something to be proud of. The fact that he has autism...isn't anything over which you need to expend your pride. Embrace it, by all means, but it is not deserving of pride. It just IS, you know? Like being NT, or having AD/HD, or whatever.

But I am glad that you love your son unconditionally and don't feel that he needs to be cured...or fixed like a broken piece of machinery. And I feel like he kind of has an advantage with you having Asperger's. Someone that...understands.

Yeah, I can see where it would be easier to get an Aspie to suppress or even trade one stim for another less obvious or disruptive stim. My son doesn't speak, so I'm kind of in a pickle when it comes to giving pep talks. I'm not embarrassed by the stimming or the humming, because I live with it daily, so for the most part i don't really pay that much attention to it anymore. It has simply become the norm for us.
I've accepted the fact that I can't take my son to certain events or activities like movie theaters and weddings, as his humming and stimming would be very disruptive and I don't have the right to encroach on other people's good time, but ashamed of him??? never!

I'm another mom who is proud of her son but not of the Autism per se. You may all slam me for saying this, but I'll take my chances. There are things I really hate about my son having Asperger's. Maybe I'm still in the grieving stage and just can't get out of it. My son is an amazing person. He's pure. He's gifted intellectually. His love is like no other. However, he has incredible rage that can come out if he just misunderstands something....even when someone is trying to help him (yes I read Tracker's book and I get the challenges he faces, but really......we don't live in a bubble). He has had times when he has threatened suicide. He has had times when he has bashed his younger brother's head into a glass and caused him great injury. He has threatened people and has been alienated and ridiculed. I have made every effort to help him and I still do. There is so much to this situation that is way beyond the scope of this forum. I could talk about it for days. The truth is that it pains me greatly. I don't believe for one second that if he didn't have Asperger's he wouldn't be amazing. I don't believe that it's ok that he likes to eat his own boogers and still wets his bed and has anxiety when he tries to fall asleep. I don't believe that I should be proud of the fact that he requires deep pressure on his body to feel good in his body. I wish he could feel good in his body just like other people. I wish he could drift off to sleep just like others. I wish he could not be such a perfectionist that he would play outside...maybe some basketball or soccer, anything....just so he would be a happy kid. I wish I had the comfort of knowing that my son is capable of being independent. I can't imagine how he'll learn to pay his bills on time or keep a job or even get to his job. How will he drive a car? He is so easily side tracked. The thing is that he wants all those things. He wants everything that everyone else does and no, it's not me who has instilled this in him. I have always told him that with tremendous strengths, come some deficits.

I know this may insult some of you and that is not my intention. I just wanted to vent I guess. So, no, I'm not proud of Autism just as I wouldn't be proud of my son being blind. Yes, his hearing might be much better, but that still wouldn't make me proud of the blindness itself.

As to the people who are more profoundly Autistic....I have a friend who is like a sister to me. Her son cannot go anywhere. They all cannot go anywhere. He can only eat rice crackers and drink carrot juice because everything else will send him into agonizing pain for days or weeks. He spends a lot of time screaming in pain, banging his head, etc. There is nothing wonderful about that kind of a life. She is homeschooling him and she cannot leave his side for a second for fear that he may hurt himself. There is much more to their life and I won't get into further details. She is immensely proud of her son, but not the Autism.

Oh, and there's an author of Look Me in the Eye....Robison I believe is his name? He was talking about how happy he was to have AS and that he wouldn't change it. Then he went ahead and had TMS therapy and he said he had never felt better and basically that he was wrong to make claims that AS should never be treated. I could be misquoting here but that was something that I had read. If my son could have some sort of a therapy that would get rid of his negatives and just keep the positives of AS....and I knew for sure that it was completely safe long term, then I would most definitely help him in that way. Sorry to be the unpopular point of view here. I hope it's ok to post my real feelings.

There is no doubt that I would wish to get rid of my high levels of anxiety, then is no doubt that I would love to sleep with the ease that other people sleep, (and the ease with which my dog sleeps - she fell asleep in her water bowl the other week!! !). But I do not see any problem with the fact that I am happy to spend huge amounts of time alone, that I can be obsessed with an activity and interest to the exclusion of all others. They are the primary parts of my autism and I want to keep them. To me the others are not a part of the autism, they are just things that go along with it.

The real issue is not that we have these issues but that there is little to no support offered to us to deal with them. I saw an Occupational Therapist in December that specialises in the sensory aspects of Autism and my ability to live and to cope since that time has skyrocketed. For the first time I am able to do some simple things that will help me. I got a weighted blanket on Wednesday and I am now sleeping through the night for the first time in my life. Sure it would be nice if I did not need it, but people do not see haivng a wheelchair or a white cane to be something to be ashamed of. Why are the things that we need to accommodate our disability so hard to come by. Why instead of trying to allow us to live as we are, and to be more comfortable being who we are, do they need to cure us. I feel that much of the time that things that are done for us, are about trying to make us normal, rather than allowing us to be who we are. At the suggestion of the OT I now wear tight clothes, ie leggings and a tight singlet under normal clothes. They provide deep pressure and this allows me to remain grounded. I now wear a backpack whenever I am outside the house, and have weights in it, as again it helps me to remain grounded. I wear sunglasses inside places as it reduces the glare. I use headphones quite extensively to help block out some of the sounds. I have had things put in place that allow me to study more effectively at home, and that if I was at school would help there, but given the college environment they could not be put into place, but I do have one to one support all the time on campus. They are also things that I will be able to be put in place if and when I get a job.

So much of the support out there has focussed on removing my problems without looking at what the underlying problems were. If I am anxious there is a reason for that anxiety. I agree it is not always easy to find it and sometimes we do need things like weighted blankets for me to help with that. But if you can find why the person is anxious if you can find why they are headbanging, etc, etc then you are going to be able to support them much more.

I am currently reading the book "The Curious Incident of the Dog in the Night" by Mark Haddon. It is a novel, but it is written by a guy that worked for many years with people on the spectrum. The child in the book is profoundly autistic but at the same time highly intelligent. He has one teacher who is absolutely brilliant. It is a book for teenagers, so it is a very easy read, but so so accurate about people on the spectrum and the sensory issues that we face. It has been said to me by professionals that it was actually really good for putting things into perspective for them, just how many things can affect us in every way, shape and form and how we can focus on one thing and forget about the others. How other books can give a really great description of things and what may help, but doesn't really put in detail what it is like day to day. A book I highly recommend.

Bauhauswife, I really admire that you are able to accept your son as he is, that you are acceptiong of what he does and that there are places it may not be appropraite to take him. The way it was explained to me was that I should not be ashamed of not wanting to go to certain places, the fact is no one likes everything, I just admit that instead of pretending to do something I don't enjoy.

Camp Autism is something that has been established in Australia by parents with children with quite profound autism, so they could go away and be able to be comfortable. A group near me, has sprang up from that and they now go out for dinner once a week at a child friendly and safe venue, where the staff are made aware of the children and the facility is totally booked out. The kids are free to be who they are, they can rock in a corner, they can run around non stop, they can do as they do. And the parents are able to be free to just be with other parents and not have to spend the whole time worried about the child. The kids are not hurting each other, they are loving every second of it, they are not rocking for hours on end, and the only time they are having a tantrum is when they have to leave and any communication they do have is being spent asking when they are going again. For those homeschooling and/or with preschoolers they also get together at the local YMCA one afternoon each week for a coffee for the parents and a free time safely for the children. And they are now beginning to be able to be comfortable being who they are and to support their child to be who they are.

http://www.campautism.org/

bjcircleleb: I looked into those camps but i am scared to go into an arena full of NT's who will be commenting on how disabled their child is. And jumping on the Autism Speaks bandwagon. which really would cause me a meltdown. lol.

A few members on here actually know about my son. He has a lot more issues then just LFA. The LFA actually really helps him, because he has to do the same everyday regardless of his other issues so it pushes him forward and propels him.

I am very proud of my son and his Autism.



People have mentioned that Autism causes their child to be violent.... Just watch Super nanny and ladette to lady and you will soon see lots of NT children and teens who are violent. Autism doesn't cause violence. It can cause a melt down which can manifest itself in some people as violence. But Autism doesn't cause it. Just here in the parenting area, there are lots of judgments being placed on what Autism is which is wrong.

Solvejg, I can agree that being around a group of NT commenting on how disabled your child is can be more trouble than it is worth. Sometimes being in the disabled community can mean that you are not encouraged to do anything else, and that can be wrong too. I have seen people who get so caught up in the disability movement that that is all their life is and I do hate that also. The best example of that is in mental health and the only suggestions and case studies given of people with mental illness who are working are those who are working as consumer consultants. It is like they are comparing everyone to those people and that is the only thing that can be achieved by such people. How that encourages people to be the best they can be is beyond me.

And yes the autism speaks bandwagon is not something we need either.

All I want is for society as a whole to support me as I am, to not expect me to be something I cannot be. I should not have to be forced into the disability community to be me, but nor should I have to be cured to be able to be in the real world!!

I would also totally agree that autism does not cause behavoural problems anymore than anything else causes behaviour problems and supernanny is the best example of that. Any condition, be that autism or anything else can cause functioning to be more difficult and in the case of autism the sensory issues in particular can cause meltdowns and these can result in people hittting out. But to say that the autism causes that is wrong. Help the sensory issues, prevent the meltdowns as much as possible and you have a much better situation.

I think this clip can explain how bad some so called experts can be:
I can help you with those behavior problems...
http://www.youtube.com/watch?v=DTD5XaXn ... re=related

And these explain how useless some services can be and how they can cause problems themselves:
Behavioural analyst verses residential care staff:
http://www.youtube.com/watch?v=qr6_rFMiSmw

Behavioural analyst verses day program staff:
http://www.youtube.com/watch?v=BQL5OpIxgVA&NR=1


The sad thing is that they are just so true!!

BWAHAHA!! ! Those videos are hilarious!! Thanks for sharing them.

I would like to add one more post and then, I'll stop commenting on this topic, since I really don't want to upset anyone. I'd like to say that each person has a vastly different experience with their Autism so if yours or your child's is a great experience, then of course you would see it differently. Also, I will admit that I have some issues myself with anxiety (not with autism) and that causes me anxiety about my son's future.

Yes, there are people on that nanny show that have some meltdowns, just as there are people who have trouble sleeping but don't have Autism. And if those kids on the nanny show get the support and attention they want and need, then the meltdowns magically disappear. Well, I have provided a level of support and attention that has taken away from my younger son and makes me feel torn. I have made it my entire life's mission to make my son happy and yet, if my son is talking to someone and that person makes a certain comment that he doesn't like, it can turn into a horrible situation rather rapidly, and sorry, but that just doesn't make me embrace and love Autism. To me, it is Autism that causes this reaction. I have two boys in the same household and my other son doesn't struggle in this way and has a much better life. Is it so wrong for me to want the same for my Aspie son?

There are also people who have special interests that don't have Autism and there are people who have some degree of social challenges that don't have Autism. We can dissect the autism and say that it's not that big of a deal to have to wear tight clothing under the regular clothing (what about on a hot day?). After all, I've had people say that my son's issues aren't a big deal and actually, that makes me want to have a meltdown. They have no idea how he feels and what he wants. However, with my son, and I can only speak from my observations, it effects him at a level that is very extreme. I'm not trying to cure him of his AS. I am trying to find a way to eliminate the negative aspects of his life. Even in Tracker's book, he suggests multiple ways to deal with the negatives. He says he goes to Wal Mart late at night when he knows there aren't a lot of people. But, we do live in a world with lots of people. My son wants to go some day to Japan. How will he be able to do that when crowds overwhelm him? That's just a minor example. There are many others. He wants to go to MIT....how will he go there and not hurt someone? Can I be there to control the fact that he could hurt someone? He may end up in jail if I don't get a handle on his behavior. So, no, I remain firm in my position that I don't want him to have these issues because there is only so much about the rest of the world that we can control and ultimately, I wish he didn't have these challenges.