Help me! Is it autism

[gemsynermal]

My DD has just turned three and she's been undergoing speech assessments for the past 9 months. She can speak in two part sentences, can follow instructions, likes to be around other children (will play alongside them, occasionally asks what they are doing), can share, wait her turn, sings nursery rhymes to her little sister, has no sensory issues and can sleep solidly for five hours, however...

She still repeats back most things I say to her (always in context as in 'want a juice', she'll say 'want a juice'), she mostly ignores me when I call her name, she talks only when she wants to in that she won't answer open ended questions, she's never ever said the word 'yes'. She struggles with eye contact, if I ask her to wave goodbye, she'll say 'wave goodbye' and not actually wave.

I feel like she mostly operates in her own little bubble and only occasionally lets us in. Sometimes I get glimpses of this lovely sociable interested little girl and other times it's as if theres nothing behind the eyes. She's very affectionate and cuddly and loves me to pieces and I'm desperate to know more about what's going on in my little daughters head.

Has anyone got children who are similar? Can you help me?

That should be sleep solidly for twelve hours

She sounds quite like my daughter! Who is autistic (now 5, diagnosed at 4 but we were first told it was likely when she was just turning 3). She does that same thing of asking the question instead of answering it, late to point and wave, (very) late to say hello and goodbye to people, ignored her name a lot, at nursery often didn't understand instructions to the whole class applied to her to begin with. Brilliant big sister to her little brother and adores him. Cuddly and affectionate. Very interested in the world, including other children. At 3 she would have run up to other children in the playground smiling, but would have no idea what to do next - and if they tried to involve her would probably have got distracted/bored and wandered off. Her language developed brilliantly for nouns: she could tell me what anything was, ask me questions, but rarely asked me a question (even for a drink or snack - and then when she did start to ask would say "do you want a juice?" instead of "I want a juice" - apparently that's quite typical). Like your DD also a brilliant sleeper! Not 12 hours any more but often does 10.5 or 11. She was never a brilliant napper but always slept brilliantly overnight.

She is doing brilliantly now at 5 if that's any reassurance. We had difficult drop-offs for the first term of reception: basically anxiety around transition. But she's got a glowing school report at the end of Reception, settling in really well, working as a team with her class, doing brilliantly in her reading etc. She's had a bit of play support and SLT but no one-to-one. She has friends and increasingly likes playing with other kids and will join in their games and let them into hers. She does need a bit more down time and time by herself than other kids her age I think. I know she hangs out with the dinner ladies after lunch rather than racing to get into the playground like the other kids. But once she's there she does play with them! She's a highly empathetic, imaginative, brilliant person (as are many many autistic people - a lot of what I thought I knew about autism before DD was diagnosed was plain wrong - and got in the way of me believing she could be autistic, even though the experts seemed to see it very clearly).

Still often zones us out and refuses to answer simple questions I'm afraid

I think lack of sensory issues and good sleep really helps, as being very sensitive and/or not being a good sleeper (I think the two often go together) makes the world hard to navigate. I think my DD has some issues with proprioception and interoception, and a bit of sound and smell sensitivity (doesn't like hand dryers or the smell of the car), but like your DD mainly social differences rather than sensory.

One of the most helpful things I've found is watching videos by autistic adults about their experiences. If you look on YouTube try Sarah Hendrickx, Invisible i (Katie), Purple Ella, Sew Many Books ... there are more but that will give you a good start!

Let me know if you have any questions (or pm me, happy to chat!)

Sorry, that should be "rarely ever asked me for something"!

Thank you, this is really helpful. I feel better knowing someone else has been through my frustrations and found a way through.

She does ask for things but only occasionally and only related to food / drink. She wouldn't know if she was tired, or cold and we are really struggling with potty training because she doesn't understand when het nappy is dirty.

Her dad didn't speak until he was five and so we've put it down to a hereditary speech delay.

Can I ask how did you get the diagnosis? What are your biggest challenges now? Did you struggle with potty training?

My son is very verbal but he also had a lot of echolalia, probably up until 3.5-4. He would repeat the question as an affirmative, he was very late to say yes though said no from a very early age. He would reverse pronouns, so say you instead of I or me. He would repeat passages or phrases from books or tv both in context or out. He didn’t ask a question until he was 3.5 - what is that? And then slowly all the ‘wh’ questions came. He still often won’t answer questions, this is worse when he’s tired and when they are open ended.

His social communication is still behind his peers but his language continues to come on leaps and bounds. He was diagnosed with autism at 3.11.

Our diagnosis came as a result of us going to a speech and language drop in clinic when he was 3.5

I mean that that was the catalyst. He was diagnosed 6 months later.

We ended up in physio early as DD was a late walker. That was a mixture of hypermobility and proprioception/interoception issues I think (when she was a little baby she hated putting weight through her legs and hated tummy time). But nobody suggested autism. Then we went to an SLT about the "not asking questions" thing (which our nanny raised, I would never have noticed) and because we were seeing two services we got referred to a more general paediatric assessment. Saw them every 6 months from around 2.5 to 4 when she finally got her Dx.

Could her Dad be autistic too? I've realised I have a stack-load of autistic traits. Never would have occurred to me until I started learning more about autism.

We also found potty training very hard. That's an interoception issue if she doesn't know when she is wet/dirty and I would just stop until she is ready. We pushed too hard too early because she went to pre-school at 2.5 and they wanted them out of nappies, but that was way too early for DD. We ended up with various poo-holding issues (which I suspect we caused by trying to potty train her too early) and it just took forever. We are pretty much there now. She still has accidents but no big deal. Fresh pants and on we go. Luckily it's usually at the end of the day when she's tired and home from school, so it's easy to deal with.

I have recognised autistic traits in myself and family members too though I don’t think that I’m autistic (I may be wrong).

Yes I have stopped potty training and now waiting for her to take the lead.

I have wondered about her dad possibly being on the spectrum too, although like you said, this identification of traits has certainly challenged my preconceptions of what autism is. He is incredibly kind, empathetic, no sensory issues at all, however he and his dad are both brilliant engineers and are happy to spend hours on their own designing systems, both don't much care for social situations - not that you would know because they do make an effort. DP said he would spend most of his time in childhood playing on his own but he did have friends on highschool. His sister also struggled to make and maintain friendships so it may possibly run in the family.

Yes I'm not sure I'm actually autistic either, but definitely have traits. Some of the things that are quite sensory about me DD doesn't seem to mind but DD also has some issues that I don't remember having, so it will be interesting to see how things develop.

There is a good possibility that plenty of people with happy and fulfilling adult lives would now score an autism diagnosis in childhood though. Worth bearing in mind. Hopefully means as your DD gets older your DH will have some helpful insights and together you'll be a great resource for helping her navigate the social world! And I think that's true whether she turns out to be actually autistic/diagnosed or not (there's a concept called the "broader autism phenotype" that I definitely identify with).

Kind and empathetic are completely consistent with autism (if you look up "hyperempathy" that's a concept lots of autistic people identify with). Sensory issues are funny. I didn't think I had any until I realised I don't like ice-cream or milkshakes, can't wear buttons, put sunglasses on days when other people hardly seem to squint, often want to turn the TV down, not great at noticing when I'm hungry or tired, etc. etc. Nothing you'd notice individually but I think I am probably a bit more sensitive than most (and DD is also only a bit more sensitive than most).

I’m also a sunglasses wearer Light, I’m quite sensitive to sunlight. Dislike some noises - white noise or ticking clocks when I’m trying to sleep (though I have to say I can probably sleep anywhere now due to ds’ shenanigans). I hate listening to other people eat. I’m a sensory seeker - hair twiddler, foot rubber, finger biter.

Sorry to derail your thread OP.

Thanks Light Tripper, it is uncanny how similar in looks and personality she is to my DP and I certainly couldn't complain if she turned out to be just like him as she gets older.

I've requested a referral to paediatrician from speech therapist so I'll wait for that.

I find it very comforting to know that your daughter is thriving at school and making friends which is all I wish for my DD .

That was my biggest fear too gemsynermal but so far she's great. I'm sure there will be some bumps along the way but she's got us too, and is a very kind, creative and fun person, so I'm staying positive!

If you're on Twitter do follow Felicity Sedgewick. She is a researcher doing really interesting stuff about autistic girls and friendship. I went to a talk she gave last year and as I remember it her big takeaways are autistic girls do have friends but tend to have one or two special friends rather than a big network of casual acquaintances. If you look up Purple Ella on YouTube she has a series of videos called "Autism in Company" with her friend Ros (also autistic) and I found those very interesting.

twitter.com/SedgewickF/status/1032907812723154945

If you become convinced she is autistic there are some great books on autism in girls - e.g. "Girls and Autism":
www.amazon.co.uk/Girls-Autism-Educational-Personal-Perspectives/dp/0815377266/ref=asc_df_0815377266/?tag=mumsnetforu03-21

and

"Spectrum Women: Walking to the Beat of Autism"
www.amazon.co.uk/Spectrum-Women-Walking-Beat-Autism/dp/1785924346/ref=sr_1_1?s=books&keywords=spectrum+women&tag=mumsnetforu03-21&qid=1562951737&sr=1-1

Girls like ours have only been identified as autistic very recently, which means they are kind of a Guinea Pig generation, which is a bit worrying - but I hope it also means that we can do much better for them than for girls and women in the generation before who probably only got diagnosed in their 30s or 40s when they had kids (if at all). If you want to read some of their experiences I really enjoyed memoirs by Laura James (Odd Girl Out) and Katharine May (The Electricity of Every Living Thing). Rachel Lucas (autistic with an autistic daughter) wrote a novel called "The State of Grace" about a teenage autistic girl. There is basically a huge explosion of stuff about autistic girls and women coming out over the last couple of years, so it's kind of an exciting time once you get your head around it!

Sorry, this is a massive dump of stuff, but also check out the Molly Potter/Sarah Jennings books on feelings and friendships. DD and I have had some really good conversations about this stuff based on those books.

@openupmyeagereyes God yes, hair twiddling central here! I also used to sit on my foot a lot until it stuffed my back. And rubbing hair against lips. Since I've been learning more about stimming I've noticed myself wiggling my fingers when I get excited too ... not sure if I always did that or if I've just been inspired by all the autistic stuff I've been reading but it feels nice!

Thanks Light Tripper. I've just taken a look at purple Ella and I agree it is comforting to watch. Due to the communication problems we're experiencing at the moment it is difficult to even comprehend having a proper conversation with her at the moment and yet here are intelligent, autistic women confidently explaining their experiences and feelings.
It's good to know that there will be support groups out there for her should she need them. Thanks again for your help. I've read pretty much every post on autism diagnosis on Mumsnet and whilst I understand that no two diagnosis of autism are the same, your experience appears to be the closest to mine.

Following this as I'm wondering about my son (3.6, we have a referral for Paeds after an observation at play group).

A lot of the language stuff I don't think rings true for my son. With the asking for stuff, when is a child expected to be able to ask for something properly? DS would just point at stuff or say the word before 2 for sure, eg blueberries (or bubbies as he called them then!). I guess from when he was about 2.5 he'd say things like "want to watch peppa pig". He now asks proper questions eg what's that, who's that, why does xyz and has done for a while, although I know the "why" only really started properly at about 3.3.

Does that all sound typical? I'm scrabbling round for stuff for our paeds appointment, whenever it may be, and it's so helpful to read about what may be typical or not.

It seems to be mainly social for my DS too, like your DD lighttripper, although he will and does play/talk to kids. He's a puzzle for sure!

Just reflecting back and I don't know if the answering rings true for him either actually. Since early 2's I know I'd ask what he did in nursery and he'd say "played". He'd also always be able to answer what he ate etc. He answers questions fine now, although I'm wondering maybe if he's not good with open ended questions. If I say what did you do at play group he often says ummmmm to try and avoid it, then says played with cars or something generic. If I press I can get more info but he is often reluctant to tell me about his day, but I sort of thought that was normal.

I think that sounds OK asking-wise Confused. My DD wouldn't have pointed to ask for something at all (ever, I don't think). My DS is 2 and has always been way behind DD in terms of vocabulary at the same age - but the speech he does use is very focused on communication (he would point at things he wanted and grunt, then point with one word. He's slowly starting to put 2 words together but rarely... but despite that being "behind" and the fact his sister is autistic nobody seems that worried about him, because he communicates his needs well.

I think it's pretty normal for kids to be cryptic about what they've been doing all day. DD is actually not bad at this (I think probably better than average based on complaints from other parents and the fact I seem to tell them stuff they don't know about what happened at school at least as often as vice versa!)

Why are you concerned about him/seeing paeds? I think we've chatted before haven't we but I've forgotten, sorry!

My ds asked for things, e.g. want a biscuit. He has always been verbal it’s just that his language did not take off in the way that other children’s did at the age of probably 2.5/3 onwards. He did have lots of his own language but we also had a lot of echolalia as I’ve described above. At five and a half his social communication is still behind his peers though he is better with us than he is with his peers. I think that’s the fairly typical progression.

I don’t think that language per se rules anything in or out as speech delay without ASD obviously happens. The things to look for, IMO, are the non-verbal clues, things like joint attention - this is quite specific, it’s not just pointing. Do they bring things to show you? Do they look at your face to gauge your reaction to things, especially if they are unsure or in a new situation. Young children typically seek out adults attention and approval for what they are doing or an explanation for things around them.

Lighttripper yes you wrote a really helpful response to my thread on the SN board. I don't know how to link sorry but it's called "Community Paediatrician referral". Yes my DS did the pointing and grunting before he had the word, that was pre about 18-19 months I think as his vocabulary really exploded then. The grunt was very cute!

openupmyeagereyes yes that's what I'm unsure of now. I've been analysing videos of my DS when he was younger to see if he did the "look back" with the pointing as I can't remember. He definitely sought praise, if he did something and people clapped he would always look around smiling to see who was clapping him, or if no one clapped he would start clapping himself when he thought he'd done something good. Because his vocab has always been good, he's been saying "look mummy a tractor/aeroplane/little fly" for a good while now, rather than just pointing, but I can't say he often looks at me to see my reaction. He did "show" things though eg toys, I'm sure of it. And now at 3.6 he's always saying watch me do this etc or look I'm doing this, but I would say that's fairly recent, since 3 maybe.

Confusedandworried321 this is why it takes an expert to diagnose, or not as the case may be. Experts will look at a myriad of things, even those which may be subtle or have gone unnoticed.

Oh of course openupmyeagereyes, but from what I've heard a lot relies on evidence from the parents etc. Two health visitors who did a schedule of growth for DS recently told me he was fine, and I actually asked one of them outright and she said "he's not autistic". It's only because I pursued it and asked the HV and a community nursery nurse to observe DS at playgroup that this referral has been made at all. So although I know HV aren't as qualified as Paeds, I've lost faith a bit in professionals.

I actually asked one of them outright and she said "he's not autistic

No-one who is not qualified to diagnose autism can say if a child is or is not autistic.

Please don't waste your time listening to their opinions, this includes HVs, GPs, Teachers, SENCOs, every family member and friend.

Even if your friends are Paeds, Ed Psychs, SLTs and OTs, they cannot say whether a child is or is not autistic just by socialising with them and not carrying out any of the many standardised tests used.

I've lost faith a bit in professionals
You are not alone with that opinion.

BlankTimes. Absolutely. It's a horrible state of limbo, as I'm completely doubting my instincts as a parent as I wasn't worried until his play group manager flagged up a few things. Even though I'm very anxious and have worried about autism practically since he was born. And I go back and forth daily, sometimes even part way through the day, from being convinced he is to being convinced he isn't.

Sorry for hijacking your thread a bit there OP.