So anxious and scared that DD (22mo) has mild ASD - please help!!

[eskimomama]

Hello,
I am new to this forum, and until yesterday I would have never imagined my 22 mo DD would have any signs of ASD. But then I put 2 and 2 together and realised that yes, she never ever responded to her own name, and also after doing some research, that she never ever waved bye bye... and that she never points at familiar things when I ask where they are.

Up to now I used to put her lack of language development on that that we are a bilingual home. But now I got really S#IT SCARED and anxious to death about ASD.
Didn't sleep at all last night, made myself sick in the stomach with worry, today I'm feeling just as if I had a tummy bug and I'm watching my lovely adorable DD only seeing signs that yes, she does have all these serious symptoms...

I took her to the GP this morning who thinks it's nothing but refered me to the paedopsychiatric dept of our hospital for a check up next week.

Otherwise DD is such a lovely bunny. She smiles a lot, she plays peek a boo and giggles crazy when we do it, she smiles to strangers, she doesn't "line up" toys or bounces.
She does walk on her tip toes (only recently), and kind of flaps her arms/hands too (recent as well).
She used to point and now seems to have stopped and only flaps her hand when she wants something. She also takes my hand to get me where she wants, no pointing at all.

So I am REALLY WORRIED and sooo anxious, been crying all night. It seems that she is going through a major regression, I can't tell when it started, but maybe the last couple weeks?

Should I expect a ASD diagnosis next week?
I would be so so so grateful for any thoughts on this, from your experience.
My world is just collapsing.

Hi Eski,

Welcome to MN. I'm sorry you have so many concerns at the moment but you have done the right thing so far.

Are you in the UK?

I don't think you'll get a diagnosis next week tbh. We're a bit slow here. The US would stick you straight on an early intervention programme regardless, but again, we're a bit slow here.

The thing about ASD is that when you are new to it it is the most scary thing in the world, but as you learn about it it becomes much much less so. Try for the moment to just get yourself through the next week. Look up MCHAT and also the NAS website and make a list of behaviours that fit the criteria for a diagnosis, or a list of where your dd does not fit at all if relevant. That will help with your appointment.

Thanks very much for your quick replies. I need people who can put my exhausted/overworrying mind back on track.
We live in France now, we used to live in London until last November.

starlight I went with DH through some CHAT questionnaires and we scored yes to every parent question, so that's good, but I think it's unlikely DD will respond very well to the doctor when he points at something (she kind of looks if it's with me, hard to say really), and I know for sure she will never point at something he mentions to her (as in "where is the light" or similar - bilingualism issue or not...). She is scared of doctors as well which doesn't help.

zzzz I haven't told anyone yet, just DH and I, and we don't want to worry anyone until after the checkup. Pretty sure it's not a hearing problem as she comes straight inside the room where I play her fav cartoon (Peppa Pig), she can hear it from a distance.

Main concerns... that it's not just a regression like my GP thinks... that I could have avoided it (whatever caused it....)... that my little DD will not have a normal life really...
I know it's a classic from moms new to ASD who think "this will never happen to me, only others", but we don't know anyone with ASD so it's a big big shock...

What usually happens in the first checkup? They told me it will take an hour.

Welcome to the forum.
What kind of regression?
Has she lost speech?
22 months is about the time symptoms can show, but they can carry on developing especially if she has a regression
My DS lost alot of speech at 2 1/4 and like you we went from thinking he was typical to overnight thinking it was ASD.
does she ever look like she might have fits? Epilepsy conditions can also cause regression.
From what I have read on here they are not very willing to diagnose ASD early in France, or even at all.
On the positive side she is young and even if it is ASD, intervention early should give her a good chance and lots of stories on here about children who have good outcomes.
And if it is ASD, no you couldn't have done anything to stop it. I have three children and we did nothing different with the one with ASD than we did with the others.

You are obviously very caring and switched on parents to have picked anything up so early. That bodes well for your DD.

For us in the UK the first check up involved taking a detailed questionnaire of developmental history, milestones etc and questions about family history and details of our concerns. Some small tests of my DS more like games, looking for shared attention etc.

Have your concerns down in writing in case you forget any. My mind always went blank at the wrong time. Think about what you want to happen after the meeting, when will they see you next, what should you be doing in the meantime, do they have any recommendations, do they have any idea what, if anything, is wrong, can they refer you to speech and language therapy. Have these questions in writing, also.

She sounds like a lovely girl, full of fun.

Thanks to you too Agnes and Elen
She never said a single word, we always put it down on being raised in a bilingual home (+ her dad only talked at 3) and also changing countries when she was 13 mo.
She doesn't seem prone to fits, her tantrums are pretty mild compared to my friends' toddlers. She can be reasoned quite quickly at the moment.

I was looking for a new job and my DH was going to quit his to study but now it seems like I will be a housemom and he will be a hardworking dad for a bit longer. I am completely foreign to this world, and I must say I'm pretty scared for my DD.

I'm reading about studies and all sorts of papers on symptoms and she seems to have so many now, I don't know how it could be something else.
Just read about roughhousing habits which she loves (and I thought until now it was a good sign!!), and rudimentary pointing without looking at me.

I don't know anything about the treatments or what it really means when they say kids with mild symptoms who receive early treatment turn out quite ok. Could you clarify with details?

What kind of daily life is ahead of us, and what kind of education will she get...I suppose SN schools etc. What kind of support will she need from us when she is an adult, and when we are gone, will she ever have kids, will we ever have another child, etc etc
Sorry for writing out loud all the sad stuff in my head. I''m happy to have found this forum.

'What kind of support will she need from us when she is an adult, and when we are gone, will she ever have kids, will we ever have another child, etc etc'

It's normal to have these worries but far far too early to be thinking about them if you can at all help it. Any negative response to these questions also can be said of typically developing children too. My brother is 38 and still dependent on my mum, my cousin is 36 and a drug addict. Neither are married or have children. Both need an incredible amount of resource and support.

Sorry, not trying to underplay what you are going through right now, but it really IS best to stick to the now and the near future and take it from their.

As an aside, just wanted to say that maybe we were 'lucky' but ds was indeed diagnosed after one appointment with the community paed. The only lengthy part of the process was trying to get the HV or GP to take our concerns seriously enough to refer us to the paed.

we also got a diagnosis from one appointment (lasted 45 minutes in all, he was 2.10 at the time) - that was NHS, SALT played with ds while I went through developmental history with the paed. There was no formal assessment*.

His primary issue was S&L delay ... with a couple of red flags - didn't respond to name, immature (not triadic) point, variable eye contact & toe walking. ds was then & continues to be extremely happy, loving/cuddly, no meltdowns (though stubborn), flexible, imaginative & sociable, didn't stim (has v. recently developed a couple of verbal stims), never lined anything up/rocked/flapped or had sensory issues - so in many ways not 'typical' ASD whatever that is. I have my issues with crap system but am very glad (with hindsight) that it wasn't a long drawn out process & the ASD diagnosis we got was the most useful that was available to us.

(*we took along the developmental assessment that BIBIC did which the paed glanced at)

i suspect it would be extremely unlikely that anyone would dx a child who was not yet 2yo - more likely that they will be put onto a regular assessment routine and potentially referred for speech and lang therapy or whatever they deem appropriate. in the uk they would probably offer you a few parenting courses too.

i don't know anything about dx in france, but with a bilingula background, i suspect no-one will be too keen to do anything early, and will prefer to wait. it is frustrating, but very common.

most parents go through the crystal ball stage, and just want to know how things will turn out (dd2 has cp and i was desperate to know how she/ i would cope) but it just isn't possible to predict. kids change so much over the pre-school years that unless a child fits a very specific set of criteria, it would actually be unfair to label too early. (dx is not a precursor to getting support and therapy!) at 7yo, dd2 bears absolutely no resemblance to the child she was at 2, and i often wonder if any of her therapists from that time would believe it was the same child!

so, seek help and support for the difficulties you feel your child has, but don't focus on the dx bit, maybe?

Welcome to this forum

I can well understand the anxiousness you are feeling. That is exactly how I was in the beginning. It will do you no good though as you cannot see into the future. Your lovely happy DD sounds wonderful and she is only 22months old. You said your DH didnt start talking till he was 3 and she may just be following a hereditary pattern.

You are doing the right thing in referring her for an assessment. Just take one day at a time. She is still the same little girl that was there before your concerns so carryon enjoying her as she is and let the assessment take its course and go from there.

Her future is a long way off and no one can predict anyones future. At this moment in time your head will be full of what ifs but what I would do is concentrate on one issue at a time ie speach and look up and research stratagies to help her progress in that. Dont wait for a diagnosis of anything. Any early intervention you put in place yourself will only serve to improve things for her

Not necessarily special school no, the majority of children with ASD are in mainstream in UK - not always where their parents think they should be but resources dictate these things usually.
For mild ASD much more likely to be mainstream + some additional support
Getting a book from Hanen (google for best price) eg It Takes two to talk (language delay) or More than words (if you think more likely to be asd) is a good place to start. Has lots of ideas for how to promote language
A US website teachmetotalk.com has ideas and advice too
For ASD you want to be looking for the lack of interaction - children without speech can interact and communicate typically / be typically social eg with gestures rather than words - its the absence of a to and fro eg if you say something does she babble back? Does she keep eye contact? If you sung row your boat on your knee would she be watching you, gesturing she wants you to sing more? Smiling. Engaging with you? The peek a boo sounds really positive.
Does she follow any instructions which would indicate she understands language even if she is not saying any words?
Is she too passive / easy going? eg a very easy child, content on her own?
Research autism has details of different therapies
Its far too early to say what the future holds.
My nephew had an unexplained speech delay and just needed speech therapy and caught up.
Its not uncommon with bilingual families to speak late
My son has classic moderately severe autism - he is very delayed and struggles to learn but is making good progress
I felt pretty hopeless where you are now, but I feel much more hopeful now he is getting good therapy (Applied Behaviour Analysis and speech therapy) and making good progress
I still have no idea what the future holds for him 2 years on. It will probably be around age 7 that we will know roughly what the outcome will be.
One of the hardest things is adjusting to the idea that you don't know.
But as Star says the same is true for any child, none of them come with any guarantees.
Good luck next week.

Thanks a million Agnes, this is really really helpful information and it makes me feel better (as in clearer in my head). Thank you!!