Starting school & AS/ASD concerns

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My daughter will be starting school soon. In terms of learning I suspect she'll love that there will be some more advanced topics available. She's a smart cookie
Up till now she's been doing fine in groups of up to 15 children, but school will be busier. I think her class will have about 25 children in it. Also, days will be longer.

Now when I say doing fine, I mean I get reports of her cooperating and participating well in fairly structured play. The only comments I get is that she's very adamant of wanting to do things herself (no helping, go away!) and that she never cries even though she regularly stumbles and falls.

However when I pick her up she starts behaving rather rigidly before we even are out of the door.
Some examples:
- When she's decided she wants to get her coat from the rack by herself she'll scream bloody murder if I had dared touch it.
- There was a button at adult height to open the door. I made the mistake of lifting her up to press it once. Since I've had to do that every single time we passed that button on our way out unless I felt like having a screaming child for about an hour afterwards.
- Once home, she pretty much collapses in front of the tv and just wants to be left alone. She gets angry when I dare touch her. After anywhere between 40 minutes and 2 hours she'll gets progressively more cosy, first touching me with a foot if I sit next to her on the couch, then sitting against me, then leaning and by that point she'll usually accept some hugs.

To me this seems like she's overstimulated and requires processing time.
In general, she's someone who knows what she wants but can be reasoned with, although she's extremely controlling when we play. Whenever tired she demands that I foresee her every whim and gets angry/upset if things happen different from she had envisioned.

Am I an overconcerned parent if I think she might be like me?

I don't want to raise concerns at the school at this point: I think they should first have a good look at her (and her awesomeness) before thinking of her with all the prejudice a dx (or suggestion of one, I'm unsure she would qualify at this point) often introduces.

Hence I'm going with 'wait and see what happens', but I'd like to ask you all if there are things I could do to help her (more) outside of school. I think I'm doing pretty well being aware of this and facilitating her needs, but she's my first child so I can't possibly know everything
Also, what signs would tell you she's _not_ doing well and needs more help?

My guess is that with the longer school day she will find it more of a strain and will need even more recovery time than she does now. Don't enroll her in any after-school activities for at least the first semester. We made the mistake with my son of trying to continue OT, soccer, and social skills class after school when he started kindergarten, and it was just way too much for him.

If it's possible for you to volunteer in her class a couple times a month, that would give you a first hand view of how she's really doing. DS's teachers usually tended to emphasize the positive and gloss over the negatives, so I didn't realize until quite late in the school year that he was never able to sit in the reading group (and so was getting very little reading instruction!)

Thank you, I now feel a bit less overprotective Most people I share this concern with are already surprised at her current level of recovery time, and especially at the difference in attitude at preschool and at home. As such they cannot begin to imagine what 'more than this' might look like, and are thus of little help. I suspect they consider "adapting to circumstances (until too tired to do so)" beyond children this age, but I was (and am, in fact) the same.

Luckily the school allows for a transition period, so it won't be longer in hours right away. I did consider delaying the start of her swimming lessons a bit - she's allowed to start in the fall but then holiday season is coming up so I figured January might be better. Thank you for pointing it out in this context. Somehow I did manage to consider 'Christmas is a busy time' but hadn't yet connected the dots to this particular concern



Another useful reminder! The preschool didn't allow this so this possibility had slipped my mind. It's a bit tricky with my own burnout-recovery on the way (large groups of screaming children are a bit much for me too), but I'll definitely ask



Could you clarify what you mean by 'not able to sit in reading group'?

All the bold bits signify to me red flags for autism, the underlined bit sounds just like my daughter who has HFA. She is already at increased risk of autism as you are on the spectrum yourself. It's not too early to start enquiring about assessment for her and the earlier you can get any interventions needed the better for your daughter. You aren't being over-concerned.

I should preface this by noting that some AS kids manage to handle a general ed classroom. My son is not one of them, and did have problems even in a group of 10 or 15.. We had a nightmare experience, so keep in mind that this is a worst case situation, and your daughter may be able to hold it in at school and then fall apart at home. You may also have better luck with the school staff than we did.

DS had verbal outbursts throughout the day, and frequent meltdowns involving screaming, running out of the room, throwing things, hitting, kicking, biting, head butting, etc. The kindergarten teacher worked her butt off to keep him calm. One of her accommodations was that she simply stopped requiring him to join the reading group. She did whatever 1:1 work with him that she could squeeze in. He made no progress in learning to read -- he started kindergarten knowing all his letters and sounds, and finished it at about the same level. There was an aide in the classroom that was used to babysit DS during meltdowns, but that person had no behavioral or educational training. I volunteered once a week, and saw enough to realize DS needed ADHD medication (he was up out of his seat every two minutes). The teacher gave me daily updates, but it was always about how things were getting just a little bit better over time.

The teacher did not push the principal nor the special ed case manager for help, and when the 1st grade teacher started pushing for help, the principal and the district were not at all responsive. The advocate we used didn't give much useful advice, she was mostly concerned with nitpicking the goals. We switched to a better one the next year, but still couldn't get traction against the bureaucracy. We were so overwhelmed with handling behavior emergencies that we lost sight of the big picture, which was that our son was not learning anything. We were also seeing improvements from medication, and from a behavioral specialist they finally brought in late May, so it seemed like a solution was just around the corner.

In first grade, the school finally decided he was too disruptive and physically dangerous to the other children, and pressured us to accept placement in a special day class designed for children with Downs Syndrome. We ended up pulling him out to homeschool, then discovered that there was a therapy practice in our area that set up a tiny school for 10 kids with AS. We're paying privately for it, because it would take at least a year to get through a legal process to get the school to pay for it. In just two months, they were able to get DS to remain mostly calm and learn. He's so much happier, and life has gotten better all around now that he is under less stress.

Apparently school officials often don't care about kindergarten because its legally optional. A friend in another district had a similar problem, where the kindergarten teacher minimized everything and it all hit the fan in first grade. Her son also ended up in a nonpublic autism program.

I guess my advice would be to start finding out what other options you have if public school doesn't work out. If your daughter says she hates school or wants to homeschool, take her concerns seriously.

With what you've written, I would find a developmental psychologist who is trained to give the ADOS. You can get a dx but not give it to the school until you need help. You will get frustrated and want to fix things long before the school acknowledges there is a problem, and it would be good to have a dx in your back pocket instead of waiting 3-6 months for an appointment.

Something to be aware of: I was essentially banned from DS's preschool class because he couldn't manage his "school self" with his mother there (they didn't kick me out, we came to this conclusion at the same time.) He would fall apart completely on days when I was there (and even later, when he was in elementary school - we'd notice behavior would happen on the days when he saw me in school volunteering - even if I was volunteering outside his classroom.) Not to say it can't be done, but do be aware that even NT kids sometimes amp up the bad behavior when their parents are in the room.

I agree that there are red flags - but I've also seen kids entering kindergarten with these behaviors and worried parents who wind up making the developmental jump to appropriate behavior just under the wire. So - worth watching, but keep an eye out to see if she develops self-management skills during kindergarten. In other words, I'd walk into the school with some behavior management strategies and tell them your general concerns about her behavior but take a wait and see approach when it comes to asking for an evaluation.

Of course, if things get worse, don't hesitate to ask for one - and make sure you are keeping track of behavior at home, because they may not see the recovery time and it is important.

That was my impression too, but of course all of this is very ontopic regarding myself so it might be too easy to project things onto her.... I'm trying to rule that out.

If I mention all these little things to just anyone I get the 'nah this is just her age!' or 'nah she is simply strong-willed'. Only the pattern is not confined to this particular age alone, and there is a matter of degree - all children will be stubborn at times. However when the 'things must happen as envisioned' tiredness kicks in, she's genuinely upset/panicky, like 'I have to have my way because I want to boss you around' (she tries that too, sometimes, and it is distinctly different).

Regarding 'interventions' - could you tell me more about what they might entail? It's not that I am against getting help but I am well aware that the wrong kinds of help can do more harm than good. Hence I'm a bit careful to only seek it out when needed. Once I do, it helps me to have an idea of what to expect.



Oh dear, that certainly sounds like an ordeal I'm very happy to hear that you managed to find a more suitable place for him. Thank you for sharing it, as it gives me at least some idea of how this could develop. Of course each child is different, but examples help a lot.



That is a good point. However I am not completely certain if 'not giving it to school' is a viable option, I've gotten into trouble regarding 'withholding information' before. In addition, I don't think my daughter's father (we're separated but on good terms, and he does have a say in this) would be okay with getting her labeled before she experiences real difficulty.

Luckily the school seems rather willing to tailor education to the needs of specific children, without immediately demanding 'proof'. My daughter will be getting attention for being a bit ahead of her age without formal testing. 'Likely because of me' plus my observations was reason enough for them. I know they actively try to accommodate everyone, and I think this includes ADHD/ASD. If not now, then soon.

The difficulty with special education here is that it is split up by 'type of problem', so an ASD-expert school might not know much about the needs of those who learn more quickly, and the other way around. Also, I prefer mainstream because I think it helped me to not be considered that kind of special as a child. Not that there is anything wrong with people who are, but prejudice from people who do think so is one thing she could do without.

I managed okay-ish in school without anyone ever knowing what my issues were, so I'm hoping that for her, me knowing will already make a difference. At least I know what to look for



Ah right yes. I've seen that happen. I'll be sure to check that with the teacher. I'm told she's a good observer so that should help too



I was thinking of mainly bringing up the tiredness-afterwards concern, as I think this should be a factor in deciding if she's ready for full days after a transition period. There will be a handover from her current group too so the never-crying and dont-you-dare-help might be already covered there. There they consider her smart and temperamental, so that may be a good place to start.