lots of stress - daughter under evaluation

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I would ask the preschool teachers what specific behaviors caused them to ask for her to be assessed. I don't know about the UK, but in the US teachers guard special services pretty jealously; there aren't really enough to go around - I've never heard of a case where they didn't have a specific reason to refer for testing, and I think it's important to know what that is.

FWIW, my son at 5 was very much like your daughter socially; he's regressed significantly since then (at the time, we were at our wits end over other behaviors, but we marveled at how he could walk up to a group of complete strangers of any age, make friends, and get them to play with him. My favorite was once he made friend with an opposing team member during a soccer match and asked us to set up a playdate at the end of the game. To this day, though sadly he's losing those skills to anxiety and school bullies, he is still someone who everyone remembers.)

Since I'm running short on time, I read your intro but not the DSM match, nor the other posts, so may have to amend this later.

Some general points, however:

1) Not all AS kids fit the DSM. My son doesn't fit it all that well but I've come to realize that in key areas, he most definitely is AS.

2) If a label is going to be placed on a child, I find the AS label to be one of the more useful ones. It gives you access to services and accommodations while making it less likely (compared to some other labels) they will try to warehouse your child or medicate him into vanilla pudding. That can vary however, so you may want to figure out what the school plans to DO with the label if they get it.

3) While a label can help you with parenting choices, you don't need a medical evaluation to act on it. The medical label is to get you access to accommodations at school or in the larger world. My son definitely needed some accommodations at school to become his best self; ideally, accommodations are the "hand up" and not a "carry."

4) A label is only as good - or as bad - as what it does for you. They are only bad things if they cause bad things to happen to your child. With our son, the label has been a positive thing, but each situation needs to be looked at individually. I don't think your wife should be so quick to assume it is a "bad" label; it might not be. Either way, you both owe the process a fair shake.

5) We learned a lot about ourselves and our child in the diagnostic process. Done well, it is designed to find answers. Answers are not bad things, unless they are the wrong answers. But the right answer won't be found if either of you is pre-conditioned to reject certain conclusions or parts of the process; you have to start out open to it, then sit with it for a while to see if it fits, and THEN reject the conclusion if it is wrong (which most certainly does happen).

Jerrycubbins, thanks for clarifying. I guess in my experience though... there is really very little difference between having a problem with the label, and a problem with society's reaction to it. If you think about society as a sum total of all individuals, then it is individuals who won't embrace the autism label who perpetuate the societal challenges our kids face. As long as your wife counts herself among those who fear the label, she is perpetuating the very situation she fears for her own child.

It's the old saying "if you're not part of the solution, you're part of the problem". I don't want that to come across harshly, because I don't mean it that way - but the hard reality is that if we - the parents of autistic kids - are afraid of the label, how can we EVER expect to eliminate society's fear?

I wrote an article explaining why it is so crucial that parents of kids with Aspergers not shun the label. If you'd like to read it, you can find it on The Thinking Persons Guide to Autism, here: http://thinkingautismguide.blogspot.com ... -into.html

I think we can be glad that we aren't living in the time when parents hid a child's AS for fear they would be forced into an institution. Things aren't perfect yet, but they've come a long way.

Our son's diagnosis has been extremely helpful. We've gotten services we would not have been aware to ask for (things like pragmatic speech), and tuned into things we would not have fully understood (all the times we thought he must understand, but now know he did not). Still, we've got a school use diagnosis, and not a medical one, and have been able to leave the medical issue unresolved "just in case." If he someday has learned to accommodate his differences and chooses to hide them (unlikely, since he is proud of who he is, but that could change), it will be his option. Few people get to try to have their cake and eat it to, so speak, in the way we have, however. If I had had to get the medical diagnosis to get what he needed, I would have done it. If I had to turn back the clock and know I could only pick A or B, and not have the option we took, I would do it. The knowing has been THAT important to our lives. Sure, people misunderstand and make negative assumptions, but they would be doing that about him anyway. He's different, and without the label he would still be different, and visibly so. At least this way we get congratulated on how wonderful he is doing instead of being served endless lectures about how if we "would only do X" he'd be entirely different. People are still misguided, and many people look at him and think we've picked a label to get services we don't deserve (he is not "Rainman"), but it remains better than the alternative, as far as I can tell. You learn pretty fast as the parent of an AS child to not care about the world's thought process; get what you want and need, and let them think what they want to think; you can't change it, so you learn to ignore it.

Jerry-from your last post and all of the particular behaviors you answered "No" to, I am really curious as to what prompted the evaluation to begin with. I guess all cases are different, and maybe she is really mild if she is diagnosed at all.

I wouldn't worry about the school shouting it out for the world to know that she has a diagnosis. Most schools should keep a child's diagnosis private. However, whether she has a diagnosis or not, if she has odd behaviors or others perceive her as strange, then it won't matter what kind of diagnosis she has.

Hopefully, you will have answers soon, and you and your wife will be able to move forward based on the info that you get!

It seems like she's maybe over-enthusiastic about approaching new kids?
Is this a possibility - are they just offput by her bubbly nature?

Other questions-
Was she born with heart issues? Gastro issues?
Is she big on music? Singing? Perfect pitch?
Does she have widely spaced teeth?
Will she talk to anyone with ease? Despite age or gender or other bias?
Especially - will she spontaneously chat with strangers?

Would you describe her as possibly having an underdevellopped fear/safety response?

off topic for a sec, sorry: heart issues? my son has arrythmia and bursts of tachycardia....had no idea it was related! is it really?

To OddFiction:

Interesting questions... where do they go?

> Was she born with heart issues? Gastro issues?

No heart or gastro issues. She was born small 2.2 kg (4.6 pounds) but caught up really well and last time I checked whe was abothe the 90% centile for height / weight. She did develop an umbilical hernia which regressed spontaneously. The tummy has always been protruding and she probably has lordosis (accentuated curvature of the lower back)

> Is she big on music? Singing? Perfect pitch?

Not particularly. Her strong point seems to be drawing and painting. All teachers talk very highly about it both in preschool and "big school", how she fills the page, how easility she does it and detailed and even like how she can capture movement (I remember this one because it reminded me of a van Gogh painting - I am not trying to sound posh here).

> Does she have widely spaced teeth?

She does have spaced teeth if I think about it, not sure about "widely". What does it mean?

> Will she talk to anyone with ease? Despite age or gender or other bias?
> Especially - will she spontaneously chat with strangers?

She would sometimes. Some say she's quite confident. Yes.

> Would you describe her as possibly having an underdevellopped fear/safety response?

No, I acctually find comfort in seeing her aproaching climbing frames with respect although she likes experimenting new things (like hanging upside down as other children) she does give up doing things she's not entirely happy with.

>It seems like she's maybe over-enthusiastic about approaching new kids?
>Is this a possibility - are they just offput by her bubbly nature?

That's what we liked to think. Now with her being evaluated formally we are now forced to reconsider.



To angelbear,

> Jerry-from your last post and all of the particular behaviors you answered "No" to, I am really curious as to what prompted the > evaluation to begin with. I guess all cases are different, and maybe she is really mild if she is diagnosed at all.

I have pretty much covered already the things the preschool teacher told us. I will repeat them here. I am curious too because we felt we weren't really told everything they observed or their suspicion. It is understandable. If I would have a suspicion that a patient of mine has cancer I wouldn't necessarily tell him/her that to worry them without some hard evidence first.

They started by saying how intelligent and how good at drawing and how detailed her drawings are etc. etc.

Then she said there are problems with the social interaction with other kids, sometimes not considering other children feelings, jumping the queue not waiting for her turn, and rarely getting obsessive about certain activity/things/ideas she gets excited about and not being able to let go and move to the next activity.

The example that we were given for the latter is the following. The background is that she was going to the preschool part time (only in the mornings) and only one day she would stay the whole day including lunch. The lunch was somewhat the highlinght of the week to her to the point that she would frequently ask on the way to the preschool "Is there lunch at the preschool today?". She really loved having lunch in there (and yes we do feed her at home, by the way ). Well, one of the days she knew she was going to get lunch she was so excited (the teacher said) that she kept repeating it all morning with excitement to the point that she wasn't participating in the morning activities. After she had the lunch it all returned to normal for the afternoon and she was participating.

The other thing the teacher said is although she interacts with other children and seek their company, they do find she spends time on her own. Also when she does something she is so absorbed that she needs prompted several times before she breaks away with what she is doing (drawing watching tv, looking at a book or on the computer).

I don't think they mentioned eye contact but the current teacher at the "big school" mentioned it briefly. She also said that others have problems with eye contact as some don't know they should look at the person they are talking to. She is prompting them. She also said how absorbed and concentrated she can be. This is definitely a trait I have too, it annoys my wife when I don't answer.

So the teacher proposed they involve the speech and language therapist to help her communication skills with the peers and we agreed. The speech and language therapist assessed her both in the office and at the nursery, was non-committal and unsure and referred on to the pediatrician. The so called "pathway" is being followed now and the verdict comes in six months, after the next appointment or ealier if things clarify better with the assessment from the "big school" teacher which is pending.

The pediatrician did clearly say the pathway is for Aspergers / Autism.

William's Syndrome possible symptoms
Talkative. Approach others (too?) easily.
Cheerful demeanor, ease with strangers.
Advanced language skills or wording likely.
Failure to gain weight properly as an infant
Phonophobia which can resemble hearing loss.
Issues with spacial (visual) relationships
Widely spaced teeth
Long philtrum (piece between nose and lip)
Flattened nasal bridge, Wide forehead
Starred pupil (notable in blue or green eyes)
Educators often certain of a mysterious problem.
Some occassions of anxiety.

Last edited by OddFiction on 22 Oct 2010, 11:22 am, edited 2 times in total.

Hmm.. Actually you said she draws real accurately and doesn't go for much eye contact.
William's kids usually draw things with parts in the wrong places (car tires disconnected from the car, etc)

There's a kid I've watched grow up in my neighborhood I can almost guarantee has this (I came across it when researching "mistaken Aspergers diagnoses), and my recent encounter with him (he'd escaped to the park alone again) was probably imposing on my reading of your posts. Forgive me?

Last edited by OddFiction on 22 Oct 2010, 11:24 am, edited 2 times in total.

I think it's important to note that kids behave differently when with their parents in their comfort zone, but when on their own in school can show thing that aren't apparent at home.

DEFINITELY. Henry, my 5 year old, is COMPLETELY different at school than at home!

We also need to remember that it is absolutely impossible to diagnose over the Internet. Not to say that some discussion of potential criteria is inappropriate.

With respect to socialization, I will point out that my son was (and is) very social. But, as those of us with social kids come to realize, he's really bad at it. As a toddler he didn't know what kids to leave alone, and ended up rejected so much simply because he would always approach at the worst time, or in the wrong way, and so on. He had many issues in preschool, which no one at the time thought to attribute to AS (he wasn't diagnosed until he was 7). We really came into AS through the back door, because it wasn't obvious at all.

What we DID know by first grade was that there was a gap between perceived intelligence, and ability to perform at school. His preschool wanted to blame that on bad parenting, his K teacher on him being "lazy," but his first grade teacher knew instinctively that it wasn't anything like that, and that something was going on. She didn't know what, and was actually surprised when the AS diagnosis came in, but she knew it was something.

Most likely, that is what the teachers are seeing with your daughter - just, something. And, seriously, of all the first steps they could have taken in the name game, I far prefer "AS" to "bad parent" or "lazy."

Do let us know how it all turns out.

Yes, please keep us posted. It is so funny how each case is different. As far as interacting with other children, at least your daughter has the desire to interact, so maybe if they just work on helping her learn how to do this better, things will be just fine. I can honestly say that my son appears to have NO desire to interact with children his age. I do not think I have ever once seen him initiate play with any child in all of his 5 yrs........So, at least you have that on your side!