2.1 year old girl Autistic traits

[LondonSE17]

Hi Everyone, first post, longtime lurker and desperately need some advice

Last week my 2.1 year old girl had her review with the HV. HV was very concerned with her lack of speech and said she is still a baby but should be acting like a little girl and showing her things like her toys (showing off basically - daughter was tired and a bit moody as due a nap

Anyway after the HV left I started to have a look online about speech delay, and come across lots of info about Autism...I nearly died inside as everything I read described my daughter perfectly. I called the HV and told her I want to come back and see her as in the first meeting I was taken back and it didn't really sink in. So I went back to see her and she agreed daughter does have some autism TRAITS but these could disappear once her language is sorted. She also reassured me she seen a lot worse in autistic 2 year olds.

These are the things I have noticed about daughter

Doesn't respond to name
doesn't point to things she wants
poor eye contact
completely ignores strangers if they say hello
leads me and throws my hand at things she wants
a rapid head growth 4 percentile to 75 percentile between birth and 8 weeks
flaps but quite subtle compared to videos I seen on youtube
spins a lot whilst looking at hands
stares in to space sometimes
does this little dance thing where she goes in a circle and goes up and down with her foot
doesn't understand commands apart from bath and bed
is on gluten free diet from 12 month as was waking all night with wind (has no allergies though as had her tested at private doctor)
doesn't like me invading her space, pushes me away
she will play a bit with me, she likes to hide under the covers with me
she plays running games with her dad and will run away from him laughing and seek me out to "protect her" in their game
prone to tantrums and hard to get her out of them
tries to eat sand, crayons, even mud (yuck)
with the sand eating I thought she grew out of it but has started again
likes spinning pram wheels but will do in for a minute or so not hours
Same with her toys, like opening and closing doors of the toys but will quickly move on from this
she can count to 10 and even read numbers. Like if she see a 7 on the wall she will say seven
knows some colours
knows most the alphabet
knows some words, like apple, baby, bubbles etc and can recognize and identify these
never calls me mummy
bad sleep ( tho this has improved since I stop letting her play with ipad)

Ive always had my hands full with her but I just though she was strong willed and independent, now I'm seeing her with the rose tinted glasses off.

I guess what am asking is this : Is there any HOPE she isn't autistic?!

Also for my own peace of mind I would like to do a private assessment also, so any recommendations in Central London?

Thanks for reading :-(

You asked how she was at 2. Her language was very advanced, but toddler groups were a nightmare, and we ended up going to a limited selection where compliance with instructions were not required!

She still is very very selective about saying hallo and goodbye. She likes her own company, but is getting to a point where she's aware of friendships and worries about them and not having them.

I also didn't have her at nursery until late, and so it was quite easy to attribute some of her ways to not being socialised at nursery etc. Having said that, she definitely learnt some social skills at nursery. She now participates in some group things and sits down for story times sometimes and she never would before, so there's been real improvement in some things.

She doesn't feel any social pressure, and this is a good and bad thing. She is amazing at telling off older children who get into ball pools with shoes on for example!

We had a disaster with her first nursery, so be careful where you choose. We took her out and went to a sure start nursery, which was so much better for her. And we have ended up at a lovely school, and to my amazement she's generally really happy and has started to read and write, and all I wanted was for her to manage to go every day, but she's out doing my expectations.

I do worry about the more formal years of school (they are accommodating her so well at the moment, but teachers won't always be happy to let her wander off etc) , and am looking for as much help as I can prior to assessment.

Children are very different at 2 though. I knew another girl who had no language at 2 at all. She might have said 'mum' but I'm not even sure about that. By 3 she was exactly the same as the others. I know you have other concerns, but there are wide variations at this point amongst all kids.

Have just checked through old paperwork, it was the London Children's Practice, Wimpole Street. We saw Jackie Harland - highly respected S&LT esp with children with communication/social difficulties. It was about 5 years ago though, hopefully she/the practice is still there!

Yes my ds has ASD, diagnosed when he was 3.

Tbh I think most paediatricians primarily diagnose - they probably wouldn't suggest much in the way of practical things themselves. When ds was diagnosed (NHS developmental paed) we were basically given a few NAS leaflets and sent on our merry way! Luckily I'd discovered mumsnet by then and had a friend whose ds had recently been diagnosed so I saw the kind of early intervention she was helping her ds with, and the difference it was making. (We started doing the same ourselves before getting the dx actually, as I could see that he needed the help with or without a diagnosis.)

Our NHS assessment also included lots of info from us, and his nursery - it did include time with ds, but probably only a third of the whole assessment itself. The info you give them is equally important, and it might even be that them just seeing a snapshot of your dd wouldn't give them a full picture, depending on whether she's having a 'good' or 'bad' day.

Imho a diagnosis isn't the most important thing at this age - if you can see your dd struggling to communicate, to interact, getting more rigid in behaviour etc, I kind of think it's more important to do what you can to help them rather than wait for any diagnosis (which you may not get, of course ) - the wait for NHS assessment might be a good few months, but there's lots you can do to help while you wait. I'd maybe search for old posts by Moondog on this board - a huge fount of wisdom.

And keep posting here - the is she/isn't she phase is really awful, I remember it very vividly, and the more talking you can do with others who've been through it, the better, especially if you don't have anyone around in RL to talk to about it

Hi everyone

Its been a busy couple of days, now the shock has subsidised a bit, I just want to help her as much as possible. GP has referred her to assessed (he said it is normally a quick process?) Anyway I'm holding off the private thing for now as I don't see it as the most important thing. Childrens centre is a part of Tommys, and I think tommys is a great hospital (d born there)

I also went to a chattertime class and sorted the SALT referral, she was pretty good in the class too (daughter) played nicely. The staff there really interact with the kids, one lady spent ages with her in the water pit, speaking to her and playing. It has actually shown me the lack of pretend play I do with her.

I think I have spoiled d in the wrong way, with toys and days out to various under 5 things all weekend instead of quality time with her. I think Ipad has had quite an impact, I was letting her play with it for to long mainly because i was so exhausted (working full time or very little sleep and dragging my butt all directions across London every weekend for various activities - my back is completely gone from lugging buggy and her up and down stairs on the tube)

Ipad has been gone for around 2 weeks and the improve in sleep is HUGE - cant believe it..i get to sleep! Anyway on Friday when all this began I let her have the ipad because i was so distraught and I didn't manage to get her to bed till gone 1 am. So I am 100% sure there is connection

I am playing and interacting with her more, its harder work but I have a bit more energy! I sit on the floor now in the evenings and play with toys. Last night she even let me read to her and laughed at the book! When I got home from work one day she even turned round when she heard me call and run up to me.

Anyway I know there is a long way to go and there are a lot of issues. My next step which I really need help with is private speech therapist. There is no way I'm sitting around for 2 months for SALT. How the hell do I find a speech therapist that's good? I want to get this moving immediately

Thanks for reading

I agree, I thought the Ipad was ok because she was learning quite a lot from it! She always went on to YOUTUBE and watched kids teaching videos and nursery rhymes. I do still use iPhone for her in restaurant and journey but that's it. Its not banned forever, I'm just working out what's appropriate/beneficial

I understand I cant fix it if she has autism, but from what I have researched development is improved a lot by early intervention. I just want her to be the best SHE can be and give her the best chance. I think I need some outside help (speech therapist) but I will ask the HV is they agree first

Hi, and welcome.

As previous posters have said, there are a lot of us here with children with ASD.

I have 3 dc, all on the spectrum. Dd1 is 11 now, and was diagnosed at 2 with severe ASD. She was unable to communicate effectively at that point, had no playskills at all and was exactly like a giant baby. It was tough, but we have all worked at finding her the right support. She is now, 9 years in, completely unrecognisable from the toddler she was, although she still has significant needs and will probably never live independently. The main thing to remember is that, with any developmental delays, it is a marathon not a sprint. I well remember the feeling a of needing to get everything sorted now and make as much better as I could. It is exhausting, and I could not have kept up that initial pace without severe burnout - we have been on this path for iver 10 years now, and there have been huge gains, but still so much to do in other areas.

Things that helped us/dd1:

ABA. We did a home programme initially, and she has now been in an ABA school for the last 6 years. It has helped enormously, and dd1 would not be where she is today (reading, writing, holding conversations, learning to cook basic meals, and competing in sports competitions at a national level) without it.

Gluten/dairy free diet and biomed. This also helped dd1 enormously. I know you said your dd is already gluten free - if you think dietary changes have helped her already, it might be worth looking up biomed. It really changed dd1's life, and we didn't do anything huge or invasive in terms of biomed. Just nutritional support and ensuring she could actually process the foods we were giving her.

I too used Jackie Harland at the London Childrens Practice, but again it was many years ago. If you are wanting to get SALT off to a flying start, you could do a lot worse than reading the Hanen books - It takes two to talk, and More than words. They are expensive (your library could order them in, maybe?) but they are an excellent resource and will mostly cover what type of thing your dd would get out of SALT at this age anyway. And they will help you support her in the ways she needs.

I also have dd2, now aged 9, and ds, age 3, both with ASD. They don't have any significant learning delays, but both have significant social communication issues.

I agree with zzzzz re: iPad. It has been an incredibly useful tool for all 3 of mine. If you are noticing an effect on sleep then limit it after say 5pm, but do look into using targeted apps to aid learning. There are some fantastic ones available, and I would say they are invaluable.

Thank you for replying. I have checked out the book and will purchase today.
Around 50 quid from amazon, does that sound right? I will start with It Takes 2 to talk.

I just have such a lack of time also, that's why I want outside help

That does sound about the right price. Tibia years since I read them, and my copies have long since been handed on, but they are really good.

I do understand about the squeeze on time. Deep breaths. Even with outside help of eg a private SALT for an hour a week or fortnight, there would still be 'more to do'. But a certain amount of that is because, with any child there is 'more to do'. They are young, there is a lot of learning to do whatever the end result is.

I also understand the feeling of feeling out of depth, and needing someone else as a guide. But honestly, at your dd's age, SALT will mostly consist of working on basic functional communication.

Sorry, I may have missed this (I am in the States in holiday at the moment, and awake at 5am due to jet lag, so apologies if I missed it) - is your dd verbal? You could look at PECS if she is nonverbal, or minimally verbal. Attending a PECS course ;back to time permitting again!) could be very useful, and will give you the basics in helping assist functional communication.

No she is not really that verbal.
Knows some stuff, counts 1-10 and can read numbers
knows most the alphabet and some colours. Words are very limited (bubbles, baby, apple) doesn't address me or her dad at all. Speaks a lot of nonsense

So a private SALT working on basic communication would be good.

Is it really such a bad idea?

It's not a bad idea at all. But it will be for (max) an hour a week, and mostly what it will do is give you ideas of how to work with her to maximise language input/optimise communication expanses.

The same can be achieved, for now, by using the Hansen books as a guide, and maybe going on a PECS course. Far cheaper overall (£100 for the books, and probably about £250 for the PECS course, as opposed to eg £60-100 per hour for private SALT), with the same probable outcomes.

I haven't had private SALT for dd1 since she was about 3. As in actual SALT intervention. She had various assessments for paperwork and to prove needs etc for funding purposes. But hands on work is done at all times, by everyone who interacts with her. She does get SALT intervention through school, but that work needs to carry on at home. What made the biggest change is us knowing how to communicate with her. And that was learned through the Hanen books, and through observing what the SALT did with her in those early sessions and realising we could be doing that too.

Your dd is very young. Any SALT will be working in basic functional communication, such as basic demands (asking for what she wants rather than leading you to it) joint attention (learning to share information and activities) and making choices. Whether that is verbally or through assisted communication (sign, PECS, even iPad apps).

We took my DD to lindon childens practice for SALT when she was three as there was none available on the NHS. It was great and I think made a big difference to her. So I would follow NHS for diagnosis but supplement with private SALT if possible.

Thanks Pandarocks

I am purchasing the book, but I like the idea of speech therapist too. An hour a week does not sound over the top or anything so I will give it a go at least.

Just finding one is the problam

Stradbroke do you mean London or Lindon?

I really would love a recommendation

see if there are any It takes Two to talk courses in your area. I went on one when my son was 5 (diagnosed at 4) and it really helped me understand how he communicates and how he will attempt to communicate. The course was ran by the local SALT. It totally changed my attitude to communication, even with neurotypical children. I remember when my son was 2. It was really hard. Everyday was a constant struggle. It does get better.

Hi

Can anyone help me regarding this book - its takes two

There seems to be different authors...which one is correct?

Thanks

Sorry the course I went on was More than words. The ittakes two to talk is by Jan pepper and Elaine Whitman. More than words is by fern sussman and is a better book in my opinion.

I'm not sure what to get now!

The prices are shocking.

Where are you looking?it was around £30 when I bought it.

Hang on and I'll find where I got it.

I got mine from Winslow Resources online. It's £39.

It takes two to talk is more for kids with a speech delay and more than words is more geared towards children with a speech delay and asd.
I think a speech therapist for consultation for a initial period of once a week/fortnight is good then you could reduce it to less often if needed. To be honest the speech therapist is there mainly for strategies and advice but it's you that does all the work. It's changing the way you communicate with your dc to get the most out of them. I found the course useful as it reset my expectations of my son. I'd been doing tasks with him that I thought were simple but in fact were quite complex for a child with asd/speech delay.
When I started doing tasks appropriate to his language level,I saw improvements.
Is she at nursery at the moment?

Sorry. I meant London children's practice. Near Harley street.

Another book that may be helpful if it's likely to be ASD is An Early Start for Your Child With Autism which gives lots of strategies for working with very young children. The ideas are similar to what you've already worked out yourself - finding play that engages the child, using physical play to help them communicate and engage, and so on. It's a great book (was really useful for us when ds was diagnosed even though he was 4) and is based on natural play so it feels less like therapy, more like just having fun.

Just an update. Daughter was diagnosed on Friday as Autistic.

However she has made phenomenal progress since I first posted. We did intensive speech therapy with a private slt at home twice a week and have just started ABA. She is completely different. Can speak more, happier and calmer and much more manageable.

I guess I'm lucky having such a quick diagnosis especially as it isn't completely obvious but she met the criteria and I was such a busy body otherwise she would have fell through the gaps.

I don't really know what happens next though.