2.5yo - just being a toddler or signs of Aspergers/something more?

[Pomtastic]

It's taken a lot for me to write this as I don't want to admit to myself that there might be an issue here :(

So DH & I have concerns about our beloved DD (2.7) & have made a list of our niggles/worries. We can't decide whether to take them to HV for a possible referral, or whether she's just a toddler & we should wait it out.

We have a big fat family history of mild Aspergers (or HFA now) in many close relatives on both sides of the family, so this is our main worry. General/social anxiety or sensory issues would be another guess.

She's never liked other people (currently actively terrified of most people, I would say), was slow to crawl/walk/point/wave. But she is so chatty with DH & I, has some imaginative play & is almost excessively empathetic (worries every crying baby isn't being cuddled, will cry if another toddler isn't being comforted). She's mostly great company; has a funny sense of humour & comes out with the randomest questions ("Why do we live?" "Does God have breasts?" or "What if there were no things?")

I feel like we need help now with the social side of things, as I just don't know what to do to help her any more. I'm utterly at a loss. Hopefully early intervention would be most helpful if there were long-term issues, but she would probably find any diagnostic process stressful & upsetting. Plus we've always planned to HE for the first few years so there's no rush to have her in nursery or school.

Here's our niggle list - feel free to skip as it's very long! I would really appreciate any thoughts/suggestions:

Social aspects:

• Only interacts with DH, me & 3 grandparents
• Doesn't like being touched by anyone except me & (most of the time) DH. On a good day her grandmas can hold her hand.
• We do something social 6 days out of 7 (friends, surestart, playgroups, park etc) to try & help this. But as soon as a person approaches us she quickly asks to leave, for various reasons (says is tired, "worried about people", cries, asks for loo 6+ times in a row to avoid people)
• From 4-20 months would cry at almost anyone other than DH or I, even if the other person only looked at her on the street or was a grandparent/friend we saw weekly. From 20months-ish she would talk to her grandmas & now LOVES playing with them, but they still can't really touch her. No progress since then (probably gone backwards actually - seems more determined/hostile when talking about how she dislikes being around other people)
• Panics when other people come near, esp children/babies (even children we've seen weekly for years) - cries & climbs up me. This is really pronounced at the moment - she's crying when other children enter the same room as her.
• Can't be left by DH or I. I can leave her with DH but usually for a few hours max before she's distressed.
• Won't move more than 2-3 feet away from me in public places (or at home on bad days) - will really panic & climb up me if I try to move. If there's no people around though she really enjoys new places & gets excited running around exploring.

• My biggest struggle - about 75% of the time she cannot cope if I'm getting dressed/going to loo/getting a meal ready (even if just putting her plate in microwave!) Any situation where I couldn't cuddle her straightaway means she gets very anxious/panicky & quickly gets hysterical. Tried to ask her why - she always says she feels sad/worried because she wanted a cuddle. Sometimes she gets stressed if DH & I talk/hug & tries to "reclaim" me back.

Sensory:

• Won't walk on a street (all physical things checked out)
• Really dislikes loud noises, especially recently - a door quietly creaking in the wind & a baby squeaking caused meltdowns this week.
• Was sensitive to too bright/too dark but a bit better recently
• Sensitive to touch - used to dislike things that made her messy but loads better after doing lots of sensory messy play over the years

Routine:

• Will only be put to bed/dealt with at night by me (often wakes every 1-2 hours after midnight)
• Fine with 'big' changes in routine if explained first (eg "We aren't seeing X today after all as they're ill")
• Very particular about everything having a certain place/certain routines of doing things, but is often ok with those being disrupted if it's explained first (unless she's tired/cross - then she gets very very worked up). Eg we listen to a CD at breakfast, I haven't been able to change the CD since May this year as she melts down.

Interests:

• Has quite strong interests, but not to a really high level of detail. Eg loves trains/buses at the moment, will watch endless repeated youtube videos of buses/Wheels on the Bus & noticed before me that different coloured trains took us to different relatives, but doesn't really get more specific than that. Has other interests too like Duplo, dolls house, toolboxes & drawing.
• Has always been pretty obsessive about books - I tend to limit reading to her to less than 2hrs a day (or my voice goes!) We had done 4-5hrs in a day before that.
• Really likes patterns - notices shapes/colours/etc that I wouldn't have

Language:

• Didn't really say 1st word til about 14-15 months, then spoke in 8+ word sentences by 17 months. Has quite 'old' sounding turns of phrase & comes out with lots of random statements
• Got quite fixated on the alphabet at 21 months & was spelling out short words for a bit. Lost interest since though!

Have you tried doing the M-CHAT screening?
www.autismspeaks.org/what-autism/diagnosis/screen-your-child

There are some traits from what you have put, however i have a boy with ASD and i know from these boards that it presents differently in girls.
It definitely sounds like she has some sensory difficulties though and it might be worth seeing an occupational therapist for a sensory assessment.
Hopefully someone else will be along soon who knows about ASD in girls.

Thanks fairgame! Just did the M-CHAT & came out as 6, so high end of medium risk. Have read a little about it presenting differently in girls too - read up on a bit of Tony Attwood & so on but not loads.

I hadn't thought of suggesting an OT for the sensory bits as well so will try that too - that seems less scary somehow than a firm diagnosis when she's so young!

If she does need a diagnosis it's best to get it as soon as possible. A lot of ASD services will not be offered unless you have a firm diagnosis, even if its clear that the child has ASD. The NHS assessment pathways are lengthy, generally 10-24 months depending on where you live. DS had to wait 9 months from being referred to diagnosis. Although all of the professionals said it was ASD, he couldnt have ASD outreach until we got that piece of paper that confirmed it.
It might be worth putting her on the waiting list anyway. A lot can happen in in 6 months at this age and you can always come off the waiting list if you don't feel it's needed.
A sensory assessment can be done separately though and exercises etc can be started off now if that is what she needs. Some OT's are good at spotting ASD as well, especially those that are trained in sensory difficulties.

Hi pom, I have a Dd with Asd, she presents like Aspergers.

If I were you I would keep a diary and give real life examples of how your Dd's difficulties impact on her life on a day to day basis.

She is quite little and there are still many proffs who are not seeing Aspergers/HFA in girls.

If you are worried it is worth making an appointment with your GP and discussing the points you made in your OP.

Good luck

Yes, I can see why you’re concerned. Good idea to talk to the GP/HV about it because (even apart from the MCHAT) it’s not usual for a two year old to be so afraid of other kids (and adults) and so clingy to you.

Also, do you think it might help if you decreased her social activities for the moment? I do understand why you want her to have a variety of social experience but (given how anxiously she seems to respond to them) six “social days” a week with different people and different settings might be a bit much for her and might even be making her more anxious and clingy? Maybe pick the ones that she likes best and just stick to those for a while?

A lot of managing my DS’s ASC really was (and still is) about lowering his anxiety. When he is feeling generally calm and relaxed he can cope with much more. So it was worth starting small – starting at whatever minimal level he was comfortable with – and gradually building up as his confidence grew. If your DD likes going out to places that don’t have other people/kids around then no harm in doing plenty of that too, so she can grow her experience of the world in a way she enjoys. Keeping life low-stress can work for anxious kids whatever the underlying cause.

It does sound like she might have some sensory issues but I do know a lot of toddlers who have sensory problems and grow out of them.

I would agree that if she doesn't like social outings then maybe ease back. My son has sensory problems and I totally avoided his triggers for a while and have noticed he's getting more tolerant.

I would second keeping a diary. Approach your HV with it. If she grows out of it then that's fantastic and nothing lost.

But she continues to have high aniexty you will at the very least see a patturn and know what to avoid / coping mechanisms.

Also having a child who has difficulties isn't always a big scary place. Maybe she just needs some sensory input from a ot - or nothing at all. Alway best to listen to your gut either way

Thank you so much for your replies

Quick update in that we saw the HV today - by happy chance she was a HV who specialises in ASD (& has a son with ASD so was very sympathetic), which was good as she can refer by herself.

So we've come away with referral to developmental paed (who apparently then refer on to ASD diagnosing team I think she said?) and a separate referral to OT to fast track help with the sensory stuff, which we hope will help decrease DD's anxiety a bit. HV really was great - listened to everything & really knew her stuff. It's brilliant that DD will be helped...but also a little bittersweet as it's extra confirmation that something might not be right, iyswim.

I mentioned we do "something social" most days - makes it sound more hectic that it is I think! So eg Mondays could be 20 min library trip, Tuesday might be seeing 1 friend for 45 mins, Weds a park trip with 1-2 friends til she asks to leave (30-60 mins) kind of thing. Was aiming for little & often of things she enjoyed (or used to but now doesn't!)

Have also tried scaling the social side of things back quite a few times but seems to make it worse (ie back to crying-at-passing-strangers level). Also twice tried doing exactly the same activity each week for half a term but again didn't seem to make a difference.

I think my gut feeling is to tuck her away in a little maternal cocoon & avoid all her triggers, but I don't quite trust that in case I'm being overprotective. It's hard to find the middle ground! I think we will be doing a lot more solo park trips for the moment thought, at least til we get OT help with the sensory side of things.

Thanks again everyone!

It's lovely yet sad when you are listened too. But the worse place to be is no one listening. That's where I have been for 5.5 years

She sounds EXACTLY like my DS, who is 3.2. He is very chatty and convivial with me, my husband, and other close relatives, and loves his two teachers at preschool, but will blank/scream/panic with anybody else, and has reacted the same way since he was a tiny baby. Many, many environments and noises set him off, but he also craves loud noises and much crashing into me and people he trusts. He, too, is obsessed with books and trains, and can recite all 100+ Thomas trains, along with their character traits and jobs. He has been in O/T for six months, and like your little girl has/has tremendous difficulty with stairs, and is roughly a year behind for physical milestones.

He has been diagnosed with sensory processing disorder, and two months on we are now going through the process of a full evaluation by the special needs department of the local school (we are in the US, so it's a different approach), after the parent/teacher conference at his preschool told the same tale: zero desire to be in the same space as another child, screaming at transitions etc.

Please let us know how you get on, as I flit from blaming a paranoid and reactionist US medical/educational system, to thinking he is definitely different from other kids, and perhaps has high-functioning autism.