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
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.
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'!
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!).
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.
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...
Is it possible for true AS sufferers to be extremely social, loving, crave attention and friends, yet have other social difficulties?
yes, it's possible. how come you're not happy? just curious because it was a relief to me when we FINALLY got the diagnosis. we actually got it when my son was 8. since we've had it, i've been able to do so much research and i understand my son's behaviors a lot more. a proper diagnosis was also needed to get him an IEP. even though it's been a long road...it is important to have my son's accommodations be tied to a legal contract. if it isn't upheld, i just keep on pushing since the school is now legally accountable for their actions.
Melindi, my son now 11, "began" his path of autism in one of the many "typical" ways autism uncovers itself. Whereas he started out with regular/normal/typical speech developement 100 words at age 1 etc., he what is called 'regressed' at arouind a year and a half. Long story -as short as possible - he "acted" autistic lining things up, no eye contact, hand flapping, sometimes we couldn't be sure he could hear us, no response to name, covered his ears alot, rythmic jouncing himself to bed, babbling unintelligably - though he was apparently happy as can be -always smiling- and social (for that age - doesn't everyone paralel play at that time?)he loved his younger siblings, animals etc., anyway, fast forward to now. It only became necesary to "officially" have him diagnosed at age 10/5th grade - when social differences and difficulties really become more pronounced and confusing. (and more complicated and abstract educational assignments were added) His diagnosis now though, is aspergers - 5 years ago, he would NOT have "fit" the "official" description of aspergers for these reasons: He has a great sense of humor, He is very cuddly and loves to hug, he is very charming and social. Years ago "having a sense of humor" cut you off the list. The point is the "professionals" and the doctors have been widening the definitions for aspergers as they "catch up" to the reality of actual people. Aspergers and autism always existed, not just in kids but in adults - but the adults have been "off the radar" and now that they are speaking up there will continue to be more understanding and hopefully less steroptypes...
(In my opinion) "they" are making "autism" in general, more widely known in the most stereotypical ways - the more extreme cases. The unfortunate thing about that is, while raising any child has it's difficulties (I have 3) the parents of newly diagnosed kids are going to tend to react in fear, when in a great many cases what you have - as a newly diagnosed "spectrum child" is great possibility and a child with unique qualities that help make our world more interesting. You know, "it takes all kinds". I know I went on a bit... :O) I want to say that Robert Frost wrote a very great poem about the road not taken and the road less traveled - and that he was better for it. Just becasue your childs path may not be the most typical path, it doesn't take away from the beauty of the journey.
Also a word about the Spectrum - the definition of the word spectrum not only has in it "prismatic colors" but has in variation and separation-your child may be anywhere on the spectrum at any time as he is allowed to develop into who he is meant to be. That is why a child does not have autism but is autistic.
Oh Melindi, sorry I forgot to mention how wonderfully my son is doing in general. While as I said this year has had it's difficulties - figuring out a sachool system always will. I wouldn't change a hair on his head, we are so proud of him and his goodness, and his sense of right and wrong. While his thinking is a bit rigid, we can't fault him on his logic! He is adored by many (yes, mainly adults!). He is one of the most interesting people (yes I am biased) I have ever met!
Anyway, Tigger the Wing mentioned the BOASTING about our children area - I probably should have put this bit there...
Blimey, plenty of replies, thank you so much - I'm very glad I found this forum with so many friendly and knowledgeable people!
You'll have to excuse me if I seem 'ignorant' of AS and the autistic spectrum; all I know really is based on websites that I have read (most recommended by the doctor who diagnosed our son) and I found much of the info very similar, as I described above. I will definitely have a good browse through these forums, and grab the book you mentioned (funnily enough the doctor also recommended that book to me but I had put the idea to one side).
I think that as my other half has managed to get by in life with many more AS traits than our son shows, and has a very good job, ASTOUNDING intelligence (grr), a wife and two children then I shouldn't worry quite so much, but I must explain my unhappiness with his diagnosis.
Having a diagnosis, and so early in his life, is wonderful. Really, it is. I am so glad we pressed for this, we were sure from very early on that something wasn't right, we did think of AS many times but were unsure. It means he will get plenty of support, we can understand his behaviour a little more and learn how to deal with it, and so on.
It's just - head in the sand moment - that I wanted him to be 'normal'. Yes, I know - define normal. My worry is bullying at school and in life in general. My hubby was terribly, horribly tormented by his peers at school (and also at home, but that is another story). This continued into early adulthood, and he has trouble at work, and in making and keeping friends, other than those who understand him. I couldn't bear the thought of my baby being bullied. I know I can't protect him forever, but he is just the most gorgeous little boy to me.
Also the relationship between me and his Daddy has been far from easy. He can be blunt, inappropriate, seem uncaring and unfeeling. He switches off from the world when he is struggling to cope at work or with life in general, leaving me to cope with the children alone (we have no family around). I know it can be hard to live with someone with AS. I am so scared of our son growing up to be the same way, and also of living with two people with AS (one undiagnosed of course). It sounds selfish, and don't get me wrong I love them both dearly and they can be wonderful! It is just hard at times.
honestjohn that really was lovely! You explained it so clearly to me, I love the idea of the austistic spectrum and its many 'colours'.
Marcia, thank you so much for the advice! Your son does sound rather similar to mine, perhaps we will see his AS more clearly when he is more your sons age?
pikajedi4 I guess I am just in shock at the moment. I think all the media images of AS and autism do not help one bit! I am glad I am here, so I can understand my son better in time.
Thank you everyone else for your replies - sorry not to have replied personally, I get a little overwhelmed sometimes. Red wine is in order I think
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!
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.)
His bro hates ketchup profusely. he once was so relived that i didn't like ketchup either. He was like "Ahhhhh thaank yoouuu!!!"
i once had some very spicy soup... i had to Defeat it. I drank all my soup fast. Defeat the spicy soup.
melindi Wrote:
Prefers to be in his underwear or naked (!)
While I know a bunch of kids who alwasy end up naked and have no Sensory issues to speak of. Some do have Sensory cahallenges, like my ds. He ended up naked alot too - though I think it was because after he trained himself to use the bathroom himself - he had a hard time rebuttoning etc., then most kids his age. Easier to take off then put back on.
Like pikajedi said, some people/kids can feel every line or bump and have sensitive skin. My ds does not, but I have found he "feels" better when his clothing is made of a natural fiber... Some people/kids like loose clothing - my ds likes it tight, in places - he used to love to wear a tie -(we had to stop him - too easy to pick on) He still wears his shirts buttoned to his neck...
Anyway, I think I should mention that what a fabric is made of is of great importance. Like you might notice he will want (need) to wear the same shirt - duplicate that fabric. (cotton is good- polyester usually not). Some people emit high "electric/energy" (don't know the real term for it) and they can actually hear the synthetic fabric as it repels the electric.(or something like that) It makes them very uncomfortable* I am doing a poor job of relaying this. * Sometimes wearing a copper bracelet will help to "ground" them. This is not in my sons case, but I have read about it.
Thought that you might want to look into it - anyone here know what this is called?
Oh no, that post was from HonestJohn - (mom of Super JK)
OH NO JUST LOGGED MY SON ON FOR the first time with HIS chosen name....(I was changing his password) and I forgot and posted under his name by mistake - though I know he will never read this thread - (Don't worry I will be directly supervising him, as he is 11) (Hey, nice folks, be on the look out for his threads - he is usually pretty clever.!)
In the future I will try and refrain from dierectly mentioning my ds..
DS is darling son (in the rest of the chat world/forums) - also dh is darling husband or damn husband, dd is daughter...
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earthmonkey wrote : " 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! "*******
That drives me bonkers too!
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.
I wear socks inside out if there's a seem like that inside. I also like ankle socks because long ones make my leg hairs sad.
I have a friend--no, acquaintance--Ok, just classmate--who insists he's sensitive to electromagnetic fields. It's possible he's just nuts though. That is all I know about that.
It sounds like some of you are actually sensitive to taste; I'm not. Only texture bugs me.
AP - I go thru periods (nonaspie) okay it happened only twice - when one of my watches stopped, and then switched watch, again, 3 watches stopped in a 2 or 3 day period. (no I didn't change the batteries at the same time) My father explained to me about being highly magnetic- how that messes with the battery. and that it also happened to him once.
My honestjohn ds doesn't like to wear socks at all...(like albert einstein) I think that only his feet and neck are specifically sensitive.
by, "Electromagnetically sensitive", I assumed you were referring to those people who get sick around technology, btw.
No, he just claims they affect his mood or something. Honestly I didn't really listen.
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.
That's what I mean. I don't mean you have had the same issues of course, but my other half has had a hard time of it. He and I are convinced he has AS and we have thought this for years, way before our son was diagnosed. He refuses to get diagnosed himself, by the way. He has always presented social symptoms too, from a very early age, and they are an issue now; people always take him the 'wrong way', and it gets him into a lot of trouble, and eye contact is often a problem. It is like talking to a brick wall sometimes! He has two passions in his life - computers/technology, and world of warcraft, and he is permanently absorbed in one of these activities. At present he spends every single waking moment in that game outside work, and spends zero time with us. If we try to talk to him when he is playing, it is like he can't hear us. Indeed I do think he can't 'hear us' when he is so lost in his own little world. It has always been that way - there always has to be some 'obsession'.
If he is stressed he goes into complete meltdown and shuts off from the world. Back a number of years ago I couldn't cope any more, and left him. Without me he refused to work, to get out of bed, to do anything at all, he simply couldn't function without me there. I didn't return because of this, by the way, but because he is still my best friend and I adore him. It goes two ways - we are alike in many ways. He says if I ever did that again he would do the same. He is estranged from his family for a number of reasons, including them being unable to cope with him.
He is extremely difficult to live with, and we have had many problems, especially with where work is concerned, and HUGE difficulties in other areas. On the other hand he is very loving and loyal, extremely intelligent (makes me sick! ), when he is not obsessed with something he is such great fun, really a lovely guy, and I do love him dearly. If I talk to him in Warcraft (I play too) he really comes to life! I just know that it's not plain sailing for many - and that is why I am unhappy. I don't want my son to be wholly like him. Truly sorry if that insults anyone in any way 
PS: Pikajedi, I LOVE your sig. Love the Aperture Science website too
I do get strange looks when my Portal ringtone plays. Seems so many people do not know what on earth it is. Sorry, completely off on a tangent, but then I seem to be good at that!