Aspies For Freedom

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WELCOME!


I think that you may have been a little misled with the old stereotypes. Not every Aspie has problems with eye contact. Indeed, no Aspie will have all the traits listed in the diagnostic manual.

And we nearly all want to have friends and be social at first - it is just that, after years of trying and getting it wrong, many Aspies eventually give up.

My four boys are all somewhere on the spectrum, although only one has an official diagnosis; another doesn't want a diagnosis as he feels he can cope OK and is very social; the other two are too old (25 and 26) to have been diagnosed as children. Every one of them is an individual. Indeed, it seems to me that there are at least as many differences between Aspies as between Autistic and 'Normal' people!

Other than that I would say his behaviours are typically Aspie. And I would like to direct you to the "Boasting about our children" thread for some inspirational stories!
why unhappy?

you have a son who is more likely to develop an innate ability at something, usually valuable skills.

most of the information you have is probably from the Autism Speaks view of things; that we are a blight, and need to be "cured". well, the only response to misinformation is education, and to that end it is a good thing that you have come here, are opposed to Autism Speaks or Wrongplanet.

I cant tell you much, because we are all different, but I can tell you this much;

most of the symptoms you have read about?
they wont manifest.

Stimming? (rocking, flapping, spinning etc)
for the sake of the child, dont suppress it. it can lead to long term psychological damage, and besides, its not harming anyone (although, if they DO start to bite themselves or what have you, suppress it subtly; a chewie toy, for example

and..ah, I'll let the Parents of the board explain the rest.
That was beautiful!
Cheers.

And welcome to the forums. Especially to the 'parents' forum.

melindi Wrote:
Hi, I'm a 29 year old Mum to two little boys aged 21 months and 4 years, and our eldest has just been diagnosed with AS.

Thing is, although I can see in some ways why they may have come to this conclusion (after 2 years of so called diagnosis) I am not happy at all.

They sent us away with plenty of literature to read, websites to visit, but much of it doesn't seem to apply to my son.

The main traits they were 'concerned' about (and which we also deemed a little different as parents) were:

His obsession with buses and bus numbers
Inability to dress himself properly
Eating with his fingers and not cutlery, difficulties in holding pens, switching hands around, etc.
Prefers to eat the same foods over and over, won't try anything new, lots of problems with retching at foods if they are 'different' or when watching babies, eat!
Prefers to be in his underwear or naked (!)
Fear of loud noises (including a mortal fear of hand dryers), doesn't like hand or hair washing
He was also slow to point, clap, wave, and started talking at 21 months (although he never stops now)
Repetitive behaviours, such as endlessly talking about the same thing, requesting the same thing (such as for us to draw him buses over and over)
Difficult time sharing toys, attachment to inanimate objects (such as not wanting to put things down, getting attached to things like stones (which funnily enough I do too!)
Horrific tantrums and violent towards me, general bad behaviour, often can't sit still
Copying language from Thomas stories and including it in every day conversation, out of the blue
Sometimes he sounds like a little old man when he talks, using large words, yet he struggles to put sentences together generally


I do many of these types of things too. About speaking, although I started speaking at the expected times, it is not nearly as natural for me as for other people around me, and it exhausts me. I also used big words, but would have trouble with making sentences through speaking. There are times for me that I can't speak at all. Just a heads up, since oftentimes the professionals ignore the fact that just because you don't have a speech delay doesn't mean speech will be 100% reliable. In elementary school, prior to my diagnosis especially, lunch ladies would yell at me for not responding to them (when I was trying to put the words together in my head first) and would grab my shoulder when I didn't respond to my name. Fortunately for me, I had limited body awareness and so my instincts to flail my arms out and hit whatever grabbed me didn't land me into punching any teachers.

melindi Wrote:
The thing is, that most literature talks about lack of eye contact, problems with imaginitive play and making friends, etc, but our son doesn't really have this difficulty.


There's a lot of stuff in the "autism literature" that I can't relate to at all. Sometimes it's because traits aren't universal (such as with eye contact), and other times it's because the literature is just plain wrong (such as the ideas that autistics lack empathy, are locked inside ourselves, that we suffer behind a "veil" of autism). I am good with making friends and being social, just that my ways of socializing are different from the norm - this was no longer a barrier when I transferred to a different high school where most students are accepting of differences, and I have good friends today with whom I regularly socialize. I hardly ever make eye contact, though, and I spend a significant portion of time rocking back and forth.

melindi Wrote:
Before he started nursery he was very clingy and unwilling to play with other children, but these days he is a VERY social little boy. We have never had any problem with eye contact though. He has friends at nursery, loves to play and talk to other children and adults, and is always showing off his latest bus book or thomas story. Just today in a bookshop he walked up to a man looking at Thomas books and said 'excuse me, could you find a Percy book for me please?', looking the man straight in the eyes. Sometimes he is distracted by other things when I am asking him questions, but aren't many children? I call this his 'selective hearing'!


I love Thomas! I also have been told I have "selective hearing". Mainly this is when my name is called and I don't notice. The main theory I've heard is that it's hard (especially when absorbed in an interesting activity) sometimes to differentiate between the background noise and when someone is calling for your attention.

melindi Wrote:
He is exceptionally affectionate with me. Lots of kisses and cuddles, tells me he loves me, loves to me cuddle up with him in bed, says he misses me when I am not there, etc. Adores his brother (when they are not arguing!).


Sometimes I was outwardly affectionate, other times not (for instance, there have been many times I am uncomfortable with hugging - not because I have any emotional distancing from my parents, just because sometimes it is sensorarily too much).

melindi Wrote:
He doesn't line up his toys (any more), in fact, he prefers to make a huge mess! He says that he hates it tidy. If he sees things out of place in a shop he often likes to tidy up though, but its far from obsessive. He also does have an imagination, although much of it seems to revolve around buses and Thomas. Oh, and he talks endlessly. Morning until evening, non stop chatter and questions. Drives me bonkers sometimes!

We are almost 100% sure that my husband has AS too, and as a child he didn't want to socialise at all. On his first day of nursery he stood in a corner and refused to join in. This continued until he was a teenager and wanted to please everybody, craving attention.


My dad is also on the spectrum (my mom is not though). When he was little, he would rock back and forth repeating "Mommy come here! Mommy come here!" (guess which of the three kids in my family echolalically imitated this...) When I was about 4 or 5 I was known to say: "I am BATMAN!" which was a phrase I commonly repeated.

melindi Wrote:
Is it possible for true AS sufferers to be extremely social, loving, crave attention and friends, yet have other social difficulties? I guess we will see more clearly how he develops when he is older. For now though I am not happy with the diagnosis, although I know something isn't quite right.

So sorry for waffling, on my very first post too! I do go on a bit...


While I wouldn't characterize myself as suffering because of being autistic, yes, it certainly is possible! Probably a lot of the doubt about the diagnosis stems from the stereotypical ways that autistics are portrayed in media, and described by scientists and other professionals. I myself doubted tremendously my diagnosis of Asperger's in my teenage years, even though by then I was aware of my rocking, intermittent speech difficulties, the greatly longer time it took me to learn self-help skills, my sensory sensitivities (my mom, to this day, can't put on a perfume or lotion or use a shampoo or soap or landry detergent that irritates me without me noticing it and coughing and needing to leave the room 12 hours after the initial use of the scent).

Lots of other stuff, too, but not really necessary for me to describe every autistic trait I have. Looking back at when I was in early elementary school, in fact, if you didn't know that I had the ability to speak would probably have guessed right away, even if you weren't familiar with the fact that someone can be highly verbal and still on the spectrum (I myself am not well at ease with language, particularly speech). In fact, I'm pretty sure that the only reason I wasn't diagnosed until much later was because I was known to speak and advanced in math (though my handwriting lagged far behind my peers). Nowadays, though, there is more information available to schools and psychologists, so more people are being diagnosed earlier. Me, though, they thought I was just being naughty. Tongue

If I haven't mentioned it already in this thread, I do have a number of good friends. In elementary and junior high school, however, I was seriously bullied. The most important thing you can do is to check up frequently and monitor what's going on at the school. It's best to ask direct and specific questions, such as "Were the other kids nice or were they mean today?" instead of something like "How was your day today?" The worst day of my life that I was bullied, I answered the latter question with "Great" because that was my scripted response (though the variation of "Fine" was also in circulation). Schools can be quick to let such bullying slide because they believe in such nonsense as "It builds character" or "They're exaggerating" or "That's what you have to expect when you act so different".

If schools ever give you or your kid that kind of crap, then the next time you talk to them, bring a copy of the state/national law regarding a safe educational environment. My schools have distributed planners to each student every year, and in the front it includes some of the education code and the school rules. If that's the case for you, it'd be good to highlight every violation and show it to the people responsible. I'm not trying to be negative; I'm just trying to be realistic. The most important thing to emphasize if bullying is happening like that is that IT'S NOT HIS FAULT for being different, and that it's not a personal failing of his that results in the bullying - he isn't "getting what's coming to him". It's a failing of the bullies for being narrow-minded and/or violent. And it's a failing of the school if they refuse to address it properly.

On a side note, I personally had many tantrums as a kid, and would lash out, usually at myself by banging my head but also by throwing things, or hitting a family member. Sometimes when I would hit or throw an object, I would accidentally harm my mom or dad or sibling. I just want you to remember, that it's not a personal thing - it's just that we need better ways to control ourselves and redirect our anger, and while such actions need punishing, it's important to emphasize that you don't think of him as an awful person because of it, and it helps to go in depth of strategies to control anger and frustration (those stress-squeezing things can be a real help; so can punching bags and pillows). It helped encourage me to use these strategies when my parents demonstrated using them themselves, and encouraging me to try along with them.

Hope my perspective helped any!

Welcome to the forum!

Alias Pseudonym Wrote:

IncognitoInnominate Wrote:

Marcia Wrote:
I've found the details of the first book I read - there were loads of things in this which described my son and helped make sense of his referal.  

Leventhal-Belfer, L and Coe, C   2004     "Asperger’s syndrome in young children"   UK   Jessica Kingsley Publishers Ltd.

I think the penny finally dropped when I read in one of the case studies about a girl with AS who liked yoghurt, as long as it didn't have "bits" in it.  At that time, I had been pushing yoghurt through a seive for my son, because it had "bits" in it! Smile  These particular yoghurts had been on special offer, so I'd bought loads of them and couldn't face eating them all myself!


aggh, bits! i have this habit of eating food in stages... i have to either eat the bits first or last, and i have to eat the layers in cake in an order, orange juice bits don't bother me... when  i have a chocolate bar i have to eat it in as many layer methoods as possible. Sontimes i try to ignore this habit, but then ignoring the layers becomes a methood. Having the food touching each other on the plate i would also prefer not to happen... but i don't wanna cause too much trouble so i ignore this.
Anyway, congratulations.  <(^_^)


I'm proud to say that I no longer retch at the idea of food with slimy texture or heterogeneous composition and am in fact capable of eating non-blended vegetable soup.  I pretend I'm eating pudding or something.

I still pick food apart, but I don't see a problem with that.  I also like food that requires a lot of pick-aparting to get at it. (<3 grapefruit.)

Food with "heterogeneous composition" is something I have never been able to get over. I can't think of any food I like that has more than three textures, and preferably they have two or less. I don't really count soup because I can eat everything in it separately - first noodles, then chicken, then veggies, etc.

Speaking of slimy food... A few years ago I was on a high school field trip in San Francisco and we stopped at some sort of giant dim sum dining hall for lunch. I knew I wasn't going to like anything there (I am the pickiest eater I know), but I supressed my urge to object to eating at this place to avoid sounding rude. When we got there there were like 300 other people in there speaking loudly, so I was kind of overwhelmed by that.

My friends ordered some beef dim sum, and told me it was just a dumpling with meat in it. "That's not so bad", I thought to myself, so I decided to give it a try. When I bit into it the "meat" had an absolutely revolting jelly-like consistency and tasted like crap. It was so horrible I almost started crying.

I also like foods you have to pick apart to eat. Walnuts, pistachios, and edamame are some of my favorites. It is enormously satisfying to peel citrus fruits like tangerines and oranges, but I don't eat too many of those.

melindi Wrote:
...Is it possible for true AS sufferers to be extremely social, loving, crave attention and friends, yet have other social difficulties? I guess we will see more clearly how he develops when he is older. For now though I am not happy with the diagnosis, although I know something isn't quite right...

It certainly is possible.

In fact, you're quite lucky to get the diagnosis (the other different behaviours you mention certainly fit), because some medical professionals will pick up on a sociable nature and rule out a diagnosis, even though all the other details are screaming AS.

Everyone is different, you don't have to have *all* the traits to be Aspie, that's why it's known as a syndrome, the traits you end up with can seem a bit pick and mix.

I, for one, am quite sociable, and noticed that I was different in that way.  When I was a child, my father commented that I didn't have friends, I had acquaintances.  And I felt it.  I felt a lack, a need.

When I was older and looking for a formal diagnosis, one professional I saw ruled out AS on the basis that I had this kind of insight into my differences and how I was quite sociable and wanted friends and stuff.  That person was wrong, because I was later formally diagnosed by a renowned AS expert.

I prefer plain things too. When I cook pasta, I only put a bit of parmesan cheese on it, because I hate tomatoes. I am similar to your friend about the ketchup thing though, only my issue is with onions. I can't touch them or smell them because they make me feel ill, and if they come in contact with or are placed near my food, I can't eat it because it will taste of onions.

melindi Wrote:

Prefers to be in his underwear or naked (!)


actually, I may be able to shed some light on this.

see, I (18 years of age) have a great problem with some clothes, particularly non-baggy jeans, where the knees, and the seam in the crotch, form annoying little lines, and dig in. the knees are evident whilst sitting, and the crotch whilst standing or walking.

add to this, the fact that I do not wear underwear, as that causes no end of discomfort, and you have an embarrassment waiting to happen.

oh yes, and sleeves, be they short or long, can rub just underneath the armpit, alongside the torso, and on the outside of the upper arm. the rear neckline of some shirts can be a problem, as can Cotton (urgh.URGH. just...URGH!)

socks, cheap ones with a huge seam at the front can be agony, and to that end I usually wander around barefooted; alas, I can no longer do that in the garden, as I have a dog now, but I digress.

so, whenever I am alone in my room, and I know that I am unlikely to be disturbed, then most of the time I will be sitting naked, or under a blanket.

EnglishLulu Wrote:

melindi Wrote:
...Is it possible for true AS sufferers to be extremely social, loving, crave attention and friends, yet have other social difficulties? I guess we will see more clearly how he develops when he is older. For now though I am not happy with the diagnosis, although I know something isn't quite right...

It certainly is possible.

In fact, you're quite lucky to get the diagnosis (the other different behaviours you mention certainly fit), because some medical professionals will pick up on a sociable nature and rule out a diagnosis, even though all the other details are screaming AS.

Everyone is different, you don't have to have *all* the traits to be Aspie, that's why it's known as a syndrome, the traits you end up with can seem a bit pick and mix.

I, for one, am quite sociable, and noticed that I was different in that way.  When I was a child, my father commented that I didn't have friends, I had acquaintances.  And I felt it.  I felt a lack, a need.

When I was older and looking for a formal diagnosis, one professional I saw ruled out AS on the basis that I had this kind of insight into my differences and how I was quite sociable and wanted friends and stuff.  That person was wrong, because I was later formally diagnosed by a renowned AS expert.


Or, in my case, since they saw that I'm clearly autistic, I got the diagnosis, and now the teachers in special ed. refer to the stereotypes to describe me, saying that I'm not good with making friends and being social despite evidence to the contrary. It's infuriating how un-educated the "professionals" can be, even when they work in the education system and have seen a number of autistic kids. I have been keenly aware of the ways that kids have shunned me and why - I didn't buy that "it's because they're jealous" thing, even though there probably were some who were jealous of my academic skills, I knew there was something else, something about my interests and the way I move and cover my hands over my ears when it's noisy, all these things, 5 years before I got a diagnosis.

I find it intriguing in a depressing sort of way how reliant the people involved in diagnosing and working with autistic people can be on stereotypes, oversimplifications/generalizations, and their own preconceptions. I can understand the general public having these kinds of misunderstandings, but professionals who work with autistic people every day? It's nuts!

Tigger_the_Wing Wrote:
I think that you may have been a little misled with the old stereotypes. Not every Aspie has problems with eye contact. Indeed, no Aspie will have all the traits listed in the diagnostic manual.

And we nearly all want to have friends and be social at first - it is just that, after years of trying and getting it wrong, many Aspies eventually give up.


Indeed... I had a few very good friends growing up, but I noticed that all of a sudden... around my teenage years... things started to get a lot more difficult socially.  It was like my childhood friends were now passing me by--quickly--in a lot of ways, and I didn't know how/why it was happening.

I wouldn't say I was very social or necessarily "loving" as a kid, but I did often crave attention from people, and would get upset when I didn't get it.  I've always had some eye contact problems, though.

pikajedi4 Wrote:
why unhappy?

you have a son who is more likely to develop an innate ability at something, usually valuable skills.


That, my friend, may be over-optimistic.  It didn't work out that way--for me--at all.

IncognitoInnominate Wrote:

Marcia Wrote:
I've found the details of the first book I read - there were loads of things in this which described my son and helped make sense of his referal.  

Leventhal-Belfer, L and Coe, C   2004     "Asperger’s syndrome in young children"   UK   Jessica Kingsley Publishers Ltd.

I think the penny finally dropped when I read in one of the case studies about a girl with AS who liked yoghurt, as long as it didn't have "bits" in it.  At that time, I had been pushing yoghurt through a seive for my son, because it had "bits" in it! Smile  These particular yoghurts had been on special offer, so I'd bought loads of them and couldn't face eating them all myself!


aggh, bits! i have this habit of eating food in stages... i have to either eat the bits first or last, and i have to eat the layers in cake in an order, orange juice bits don't bother me... when  i have a chocolate bar i have to eat it in as many layer methoods as possible. Sontimes i try to ignore this habit, but then ignoring the layers becomes a methood. Having the food touching each other on the plate i would also prefer not to happen... but i don't wanna cause too much trouble so i ignore this.
Anyway, congratulations.  <(^_^)


Unreal!  I started demanding that my Orange Juice be "pulp free" at a young age...  and I still must have it that way.

It is not smooth sailing for me at all.  My learning problems, in addition to executive dysfunction, have led to a life where I have not been able to achieve anything.  Quite literally, too.
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