An open letter to the parents of WP

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hi parents,

firstly, this is going to be a fairly direct message. if you're having a rough day, please do come back another day when things are going better. but please do read when you have a few minutes.

i know you have probably the most thankless job in the world. you're dealing with a difficult child and it puts incredible stress on you, on your family and on your relationship. you get very little support and the professionals in the field often don't seem to make much difference nor understand what is going on. but i also know you'll stand by your kids and help them as much as you can, even though it seems like a one way street.

i think you guys are critical. i think you have the best chance of finding the solutions. you have financial resources, you have people skills and this stuff isn't just theoretical for you. you LIVE it day by day. however from what i've seen here thats not happening. to me it seems like you are close minded and stuck in a certain mindset. one which isn't open to solving problems.

a few days ago i started a thread on a topic very interesting to me, about GFCF diets: http://www.wrongplanet.net/postt173543.html

i let things go further than it should, but it devolved into a few mothers telling me they didn't feel comfortable and i was a little "off". i'm paraphrasing, but it was something like that. i'm ok with that, it really doesn't matter to me what anonymous forum posters think of me. but i find the larger picture disturbing; enough that i decided to write this post before leaving.

one of the things i think happens a lot is a feeling that aspies are socially clueless, and thats how it is, so we'll have to explain everything to them, and if there is a debate, they will be in the wrong. here's an example in video: http://www.wrongplanet.net/article410.html

you can see how this lady talks to alex, i think she talks down to him in a condescending manner. i don't feel like she has true rapport with alex, nor do i feel like she truly respects him. you can even see her weird expression on the front youtube photo.

i've grown up as an undiagnosed aspie until earlier this year, and now i'm 39. it sucked and caused me a lot of stress. it caused my family a lot of stress. i've been a successful guy anyways and have been semi retired for the past few years, travelling around the world. over the years i've also thrown a lot of resources at solving this "why am i different" problem.. and i found stuff which REALLY worked, particularly in the last 18 months. at this point i've become pretty confident my read on social situations is extremely accurate. but i've got a lifetime of bad habits to break in terms of how i come across.

last night i had a 2.5 hr phone conversation with my mother. we were talking about some pretty serious issues. at one point she started to tell me how "oh, you don't understand this, its something which maybe you can't". in the past when she would have said this i would have let it go, assuming i was the clueless one and didn't understand. however i know that has changed now, so i told her i understood exactly what she was thinking, and i told her what it was. and i was bang on target, so much so that i verbalized something she was thinking but hadn't said out loud before. and it helped us get to the heart of the issue we were discussing.

i believe ASD simply isn't properly understood. but that it can be. i firmly believe ASD is a developmental disorder. and that if you have a person who has no sensory, cognitive or issues with epilepsy that a 100% development to NT caliber communication skills is going to be possible. i don't believe in magic pills or potions, i believe in clear thinking, science and rational logic.

you know yourself your child has improved, right? but how could that be possible? aren't we supposed to accept "the ASD brain is different". so how did your child improve? if you don't know why, why not? why not figure out exactly what needs to happen so all the parents here can benefit?

anytime you have chosen to accept "your child will always be different" i think you have let them down in the most tragic way possible.

here's an example of an expert -- this guy i really respect, but it shows how little understood ASD is: http://www.wrongplanet.net/postt174170.html

in this thread, simon baron cohen highlights how he believes ASD is missing cognitive empathy, but now believes ASD has affective empathy. (cognitive empathy means understanding empathy, affective empathy means FEELING empathy). he previously believed ASD had no affective empathy and he wrote this in his top selling book which came out a few months ago. this is a massive, massive change from one of the world's most known ASD researchers and it just happened in the last 3 months.

it means what i have suspected which is that ASD brains are basically normal in terms of feelings - we just don't know how to understand other people's feelings properly and thats why it causes a lot of emotional damage as we're growing up. by the time you're dealing with a kid who is risking being arrested its too late. all the problems start way before that happens, its like the "butterfly effect". discussing late stage issues like getting arrested is like taking photos of an infection. it might make you feel better, but the real problem is that you weren't washing your hands.

ANYTIME you have an aspie who comes over here and wants to talk about how he's improved, you need to get in there and find out what happened. you've got a lot of people reading here and you could easily investigate everything as a group with a critical eye. but be respectful. because an improved aspie who wants to tell parents about it doesn't need them at all. maybe the improvement isn't as much as you think it should be. but if an aspie thinks they have improved, then they have because this is a group not prone to lying, especially on a message board where there is no financial gain. and beyond that -- i think the parents should be diving into the other forums and looking for aspies who have found massive improvement. they post about it from time to time in the general forum. why not have a "special interview series" and make them the star of the show in the parents forum, and conduct a special Q&A on exactly what happened? instead of trying to look for what is wrong, look for what is right!

i'm not going to stick around on the parents forum because this isn't the right place for me and i have other venues where i can be far more effective in the ASD community. i genuinely wish you well. but please don't give up on your kids. the self promoting ASD specialists don't have the same stakes in this that you do.

i firmly believe a lot of your kids can become "super kids" one day -- both smart AND socially capable. just dig in when you hear about aspies who have improved. because improvement DOES happen and if you can find enough of the pieces of the puzzle you will one day be able to put it all together.

thanks for reading.

Thanks for posting. You make some salient points and then some. I appreciate your taking the time to write this post. You wrote from the heart and that is so important. I for one would like to see more successful in life Aspies posting about their experiences and how they got from here to there.

I guess I will have to go read your post on the gluten casein free diet. I know when my kid was around six years old he had allergies that would not quit. He was tested for allergies and they came up with nothing. A doctor said in passing, you know I have heard that dairy can cause allergies. I took all dairy out of my child's diet and it was not easy, and boom, his allergies cleared up immediately.

Thanks again.

Thank you for taking the time to write such a direct yet polite response to your observations of the parents here. It is always helpful to me to hear success stories in addition to the struggles that are often posted about here. As a parent of a child with ASD I learn from both types of messages.

I think what I find uncomfortable is the fact that your message lumps all the parents here into one category and makes assumptions about things such as acceptance and what we think about our kids. I am as much of a unique individual as you are and as my son is. You aren't the first and I am sure you won't be the last person to come to this forum with the best of intentions and get a belly-full of wrath for your efforts (I did not read your recent GFCF thread as it is a subject that comes up on this board often and my time is quite limited). I personally have been angered by statements made on this forum by anyone, parent or not, who assumes they know what's best for any of us. It drives me crazy when people come to this board and generalize about "parents of aspies". You are welcome to come and share what you like but we don't all have to take it (as in we don't have to agree with your opinion). Or we may totally agree with you OR we may be somewhere in between. Since we are all individuals, what some of us agree with or take offense to is different from others.

Acceptance that our children are different does not mean passive resignation that their lives are doomed to failure. Acceptance means knowing and understanding that they are different and that we must learn to parent differently and that we probably ought to have different expectations of the outcomes of certain actions and scenarios. It means learning to look at things from a different point of view. The generalization I will make at the risk of sounding like a hypocrite is that most parents, whether they have special needs kids or not, have precious little time to waste and the parents who stick around in this community do so because they want something better for their ASD kids. If they didn't, I really think they wouldn't be spending their time here. I just want you to consider all of that when you come here and tell us what we "need" to do or "should" be doing.

I wish you the best and I am sure that your intelligence, forthrightness and other gifts of which I do not know, can be and will be a benerfit to many inside and outside the ASD community

Thanks for your post. I read some of the thread you speak about regarding the GFCF diet. I may have responded, but it looked like is was turning into an argument, so I decided to keep out of it. Sorry, if it made you feel let down by everyone.

Although I'm on this forum as a parent, I also navigate around the other forums (both as a parent and as a probable Aspie myself). I've not sought a diagnosis for myself as so far, but no doubt someone will suggest it once my daughter gets further down the assessment route. You may find that this is the case with quite a few of the parents on here. Many of us know what it's like and have been going about finding ways to improve our own lives. So although we're here for support as parents, we have insider knowledge too.

The fact that I accept my daughter as different (which is inevitable given my own circumstances), doesn't mean that I won't try to help her be the best that she can be. She's my world and anything I can do to ensure she's happy, healthy, meeting her potential, not bullied, etc, I'll do. I've spoken with a parent of a child very like my own. But, she refuses to accept her daughter and is trying to drum the Aspergers out of her. I can honestly say that my whole family is much happier than her's and the daughter looks confused and anxious, whilst mine is happy and confident. Acceptance doesn't mean saying, 'Oh well, she has Aspergers, there's nothing I can do to help her'. I wouldn't be here on WP, if that was the case.

I've had a bit of success with diet alterations. I came across a similar diet to GFCF many years ago (candida-style diet) and managed to improve my own health with it and I've stuck with the basic principles of it. Our household isn't completely dairy and gluten free, but we keep consumption to a minimum. When my daughter has some dairy, I feel it does have an effect on her behaviour (hyperactivity more than anything).

Please don't feel unwelcome in the parents forum. I go on another website, with a parenting forum. Occasionally, my advice or will appear to be ignored by the OP. It doesn't bother me as I've done my bit, the rest is up to them.

Thanks for your post, and it is really good to read that you have been successful.

It is salutory for a parent to be told that they should not be patronising to their kid. I am sure I am patronising from time to time to our son. He is so slow on the uptake and so disorganised that it is hard to avoid this. I do at least try and tell my kids that they are always free to criticise me, but more than this is needed because our son cannot marshall an argument.

It is tremendously concerning to me that our son seems to be heading down a track, unless there is very significant external input, to in time just living off welfare and not making the most of his artistic talents. So it is an excellent idea for aspie success stories to make their successes known. This would be encouraging to both the parents of aspies/autistics and the aspies/autistics themselves.

Thanks again for your comments.

I think that most parents that bother to post on WP care. Too many parents don't even try to make themselves informed, which I think is the worst. A lot of people have to try a lot of different therapies before they figure out what works.

I don't do the GFCF diet with my kids, but I do know several caring parents who have tried it. Many of these parents are doing ABA, speech, special ed, OT, and GFCF at the same time. I use medication for anxiety (Prozac by day and Clonidine at night) rather than GFCF, and it works for my kids.

I have personally been cyberbullied on another site for being too conventional in my treatment approaches. (Where I live, many alternative therapies are available). I decided not to post abot the GFCF diet because I didn't feel like arguing with anybody.

i decided to check back in after 10 days to see what people said. thanks for the nice answers.. i'm very flattered.

some quick points:

- i'm not suggesting a GFCF diet is a solution for those here. my guess is there's a very early developmental window which shuts by the age of 3 if GFCF is a factor.

- i'm not suggesting alternative therapies. aroma candles and a lot of the other things can consume a ton of time without an outcome. i'm only interested in repeatable, scientifically provable outcomes.

- my case was mild. i was somehow successful before i found out i was on the spectrum. but i suspect this is why my case is so important -- because i'm on the very tip of the spectrum. if i am able to be provably improved, then understanding how that happened may lead to solutions all the way down the spectrum. because right now we're supposed to be viewed as a brain type which is not changeable. i simply don't believe that. i know i'm going to be 100x more successful given what has happened.

i stand firmly on the position that autism emotional issues are SOLVABLE problems. (carly on 20/20 improved a lot too!) i don't mean sensory, mental, seizure type issues; i don't have those, nor have anything to offer there.

i will be soon debating this with the global autism experts. if there are any parents here who wish to discuss directly and have children on the spectrum with have normal intelligence, no sensory issues and don't have problems with seizures, feel free to message me. i'd be happy to share my experiences. no money required.

but i may teach you how i've been learning body language.

What interests me is how the ABA you advocate is differentiated from CBT that many adults on this forum have described using for themselves. In my mind, I have CBT as a more traditional therapy useful for a wide range of issues, and ABA as a form specifically tailored to very young children with severe AS issues. Where am I going wrong in that assessment?

A few things for the record, here:

Just because some posters discarded your ideas, does not mean they are close minded or stuck. Most posters have been researching from a broad base of resources for YEARS, have talked to DOZENS of adults that have improved their AS impairments over those YEARS, and have applied multiple techniques within their families to get a sense of what works and what does not, also over YEARS. As a result, they have very valid reasons for the conclusions they have reached. You posted as if your one single year of experience and thought, entirely unique to you and your situation, trumped all that they had done and learned about children that are unique individuals different from you. That is a false approach, and your conclusion reached by the negative reaction to it also false. You need to learn to walk lightly and show some respect for ideas developed with merit by others.



You shouldn't. You are not the only person with valid ideas on this forum, and you have no idea from a few posts what any of us are doing in our homes with our children.



Maybe she has social issues herself? Is she not allowed that? Regardless, you can't extrapolate from an interchange with Alex to the rest of the NT v. AS population. Alex is a man of few words, and doesn't even develop a rapport with the moderators (almost all of whom are AS themselves) who help run this site. That is just Alex. He has other gifts.



This is your mother. I would hope that you've figured out how to read into her a bit after all these years; my AS son certainly can read me. But don't assume that because your insights on your mother are correct, that your insights on people you know less deeply are. No one can make such an assumption about themselves.



On the first sentence we agree. And on the second I'll agree on a case by case basis. Remember that if you've come to understand one person with AS, that does not mean you understand all of AS. It means you understand the one person with AS.



Being respectful runs both ways. You have to give it to get it.

Your story is your story, and I think you should tell it. But you need to tell it as YOUR STORY, and not as the end all for all children with AS. Each child is different, and what worked for you is NOT the solution for every child; it can't be because nothing is. It's all about broadening the menu and giving parents CHOICES. You do that by sharing your personal experience, and not demanding that everyone follow your methods, and claiming that everyone who chooses differently is making ignorant or poor choices that will hurt their child. Just share your thoughts and experiences, answer the questions posed to you, and keep negative thoughts to yourself.

The entire world thinks they can raise our kids better than we do, we hear it almost every day, but funny thing about that entire world: it can't agree with itself. So the sorting process and choice must fall to the parent, and that process must be respected. THAT is what you failed to understand about starting a conversation on parenting.

Last edited by DW_a_mom on 21 Sep 2011, 10:25 pm, edited 2 times in total.

DW - Wish we had a like button!

I'm sorry you feel this way. I've always found your posts insightful. And I think that your leaving this particular forum is a grave loss.

There is one thing I have learned about advocacy; if you speak to 100 people and 99 of them ignore you, disagree, argue even fight your point of view, there is always that 1 who heard your message, even if they never speak up and say so. If your words can help even a single person, your efforts and advocacy have been worth it.

some parents here are old pros - they have tried nearly everything and they have an opinion on their results.
some parents are coming here from places with a very different mindset - some are open to new ideas, others just seem ready to pick a fight and defend their views to the death.
some parents are coming here at the very beginning of a very very scary new world and journey and the - passion - people here can express can be overwhelming and scary at a time they are already scared and overwhelmed.

I think your views and opinions are important just as the debate they sometimes inspire is also VERY important in growing our opinions and views. I agree, there is no excuse for getting rude about it but, then again, I have also seen alot of Aspies posting on this sight getting accused of 'being rude' when - if we take a step back and really think about it - that was never their intention. The internet is a double edged sword that way.

I hope you do decided, ultimately, to keep posting here. That one desperate mom in a hundred really needs your insight.

I do, btw, think the overall concept of an open letter approach to share the information you wish to share is a really good one. If you look up some of the past "open letters" posted by Aspie1 you'll find some topics that did influence parents here (I think the one on pets is a big part of why we now have a cat ). It can be an effective way to share your ideas without seeming to be critical of the posting parents. You just write about your experience, how it felt to you, and how solution A was effective.