Autism in girls

[Thirtytwoinsidethesunset]

Hi there

I wanted to start this thread to ask others experiences of their little ones who went onto being diagnosed with Autism.

I have a 3 and half year old little girl who is currently on the waiting list to be seen to be assessed.

she’s quite delayed her SOGS assessment recently put her at 18 months development wise.

from a very young age around 9 months old, she never turned round when you called her name, didn’t interact with you when you played with her on the floor and avoided eye contact.

as time progressed on and she turned 2 she would never interact with other children in playgroup and would often run away and hide in cupboards, still no responding to her name, food issues started from this age, only eating plain foods, such as pasta and breaded food items. Still at this point no babbling and no speech.

as it stands now she only says one words or repetitive 2/3 word phrases sometimes in context otherwise not. She has only started calling me mummy in the last six months, first time she ever said it was six months ago.
She doesn’t understand much either maybe small instructions such as let’s go or come here, otherwise she doesn’t react or respond to anything else. She is not potty trained and is still in nappies. I cannot get her to sit down and stay in one place especially at meal times, she won’t eat a full meal and will always throw her food across the floor.

she runs around in circles or up and down and will often flap her hands, she does this monotone scream thing when she’s happy, and will have extreme melt downs when very upset, she pulls over furniture, breaks items, tries to bite herself, myself and objects.

Will take her clothes off when having an extreme meltdown, she will very rarely now turn round when her name is called. Still avoids eye contact, and won’t forge friendships in mainstream nursery.

every time she comes home will play on her own, lining up toys and will not let me or her siblings play with her toys, if her younger brother touches her toys it triggers a huge meltdown.

she does give cuddles and will sometimes give a kiss, but not often and she can pretend play in her own way. There’s more behaviours im worried about as well but I just wanted to give some context on my main concerns as I’m worried sick about her, I just want to understand her more and hear about other peoples experiences as well.

My experience is a little different in that I have a son.

However, IME schools and most people in general are awful at dealing with autism. After his diagnosis all I got was a report and a shit leaflet with a link to an online Autism group. Unless you do extensive research yourself, keep a diary to help identify triggers etc you won’t get far,

I went to a private educational psychologist who specialised in children with autism and it was an absolute game changer. She gave me techniques that actually worked and was genuinely life changing, She explained his behaviours from his point of view. Expensive but worth every penny.

@Thirtytwoinsidethesunset can I ask if your son behaved similar to my daughter?
Thank you for the recommendation for the educational psychologist I will look into one in our area I am absolutely desperate at the moment tbh I’m finding it really really hard.

He exhibited awful behaviour at home - outrageous violence/destruction of items. Fully complied in nursery/school (masking)
but never spoke out or socialised. Watched others play or did his own thing.

He is 13 now. Behaviour is pretty much perfect (NOTHING like before!) and he has a fab group of close friends. It all started turning around once I understood exactly how his brain worked.

He obviously has his quirks but we have learned to work with him rather than fight against him if you know what I mean,

Your son sounds wonderful, my daughter does her own thing in nursery and will meltdown some of the time, but mostly lashes out at home. I’m hoping one day her speech develops so she’s able to tell me more too.

To be honest I was pushed to breaking point many many times when he was younger. I promise you that it does get easier with experience of triggers, self awareness of feelings and self coping mechanisms etc.

I love my son more than anything in the world but I have spent many a time cursing autism and the challenges it brings! I see neurotypical families and think , “They’ve probably not had to go into depth about what today’s plans are” etc.

This book is essex focused but it may help you a lot. It helped me.

You should talk to your senco at preschool now about what support your daughter has via her one plan (or whatever they're called in your area) and if she'll need an EHCP at school. If she'll need one, apply now. Nationally they are very delayed especially if you have any problems or appeals, or special school is appropriate.

strmsupport.co.uk/wp-content/uploads/2022/12/ECC-Supporting-Your-Neurodiverse-Child-Oct-2022-v3.pdf

It helped us so much to have an in depth sensory assessment with an OT. The NHS one was a waste of time. Your daughter sounds like she might have some sensitivities such as how she takes her clothes off during meltdowns. My daughter also struggles with clothing.
Read the book 'the out of sync child' which is so insightful.

Things like visual timetables and extra work on emotions are also really useful for autistic girls. Preschool should be supporting you with this. X

@HateMyNewJobSoMuch i understand that so much tbh because at the moment i am at breaking point, she is such a special little girl and she does have some really loving moments but a lot of the time it is really hard. I’m glad to hear that it does get easier, it’s giving me hope that it’s not forever.

@ilikecatsandponies thank you for the book recommendation, she does have an individual development plan in nursery and we will be discussing any further support in October and the next steps if she does need a special school.

Even while she is pre speaking you can use other communication techniques such as Makaton (mr tumble is great) and pecs (picture cards for the things you are doing. I think there's an official system but we started with preschool printing photos and clip art. Now my kids draw their own pictures that we assign meaning to). Words are only one way we communicate x

I like the idea of picture cards, she does respond a little bit to the traffic light cards they have at nursery as she struggles immensely with transitions to another activity or an activity ending. That’s one of her triggers actually if something ends that she’s really enjoying.

I think even without a diagnosis it's already ok to start working on trying to see the world from her POV and adjust accordingly. The advice someone gave above about the help they got from an Ed psych is v wise. If you have the resources to see a good clinical psychologist now privately or a good occupational therapist for support on managing transitions and sensory stimulation they cannot do a diagnosis in isolation but they can observe your DD and help identify specific things you can to do make the world less stressful.

If she has autism and developmental delay she is getting much less information from her social environment about what is going to happen and why. You can probably see from your younger child that trying to learn social communication and how to interact with others is very much the work of most 2-3yr olds.

At the same time she probably has a wonderful ability to focus and when she is engaged in something rewarding for her the confusion she feels a lot from not understanding what is happening is reduced. Autistic people often talk about how intensely they enjoy engaging with the things they feel passionate about, whether that's watching favourite films, pursuing favourite hobbies, being in nature, whatever. With the right support these passions can be really helpful resources that autistic people can draw on to help them cope with what can be a very stressful neurotypical organized world.

But remember an awful work day when you have survived by thinking I am going to get home, settle in front of the TV with my favourite films, favourite dinner and a big glass of wine. Imagine if you got home settled down and five mins in someone said 'Right times up back to work'.

You would be furious!

That's why routines help autistic people so they don't get suddenly disrupted and forced to face stressful situations unexpectedly. That and gentle transitions.

Visual cues or charts for the morning or weekend days may help her - that's where picture cards can be handy. Always trail now and next activities - now we watch your favorite TV programme, next we have lunch so the change isn't a shock.

And then just breathe. If she gets overwhelmed and has a meltdown that's neither your fault or hers. It's just a lot for both of you.

I work mainly with autistic adults. When I started thirty years ago the focus was often on trying to suppress healthy autistic behaviour. Now we don't do that and support people to understand and value their autism and recognize what needs that creates and how to meet with them. Ignore anyone who wants to stop her stimming, or hyper focusing, or hand flapping or anything like that. Make sure you focus on understanding what the behaviors mean for her and why they matter, and in situations where they can be inappropriate teach additional behaviors like using fidget toys that give her the same reward.

My dd was diagnosed at 2. She’s 3 and a half now.

Early signs were seizure like shaking we actually thought a couple of times she was unwell but in hindsight it was fear from new surroundings / people. Totally non verbal. The only communication was hand leading.
severe feeding issues and now food issues leading to poor weight gain. Diagnosed ARFID as well.

We are currently just starting the ehcp process and have heard it’s very difficult 😭

Thank you @Bigcoatlady that’s really helpful, I don’t stop her doing the things that make her comfortable like the running around or the hand flapping and I always give her space to line up her toys, I just struggle with the meltdowns but trying to understand her more with all this advice on this thread is very helpful. Makes me feel less alone.

@Beetrootcocoa that sounds so tough for you, my little one always leads with her hands as well and pulls you along to where she wants to go or to what she needs.

She’s done that from 18 months old, I hope you get all the support you need with the ehcp.

My dd lines up all her toys all the time. I used to try and join in to have some kind of interaction with her but she would get extremely angry. I then decided to just get some of my items (I used make up brushes and lipsticks!) and I sat nearby to her and copied lining up my things in a similar way . After a few times I noticed she had noticed what I was doing. One day she just shuffled over and was hand leading me to pick up certain ones to line up which I thought was lovely and it made me cry as it was the first time she ever ‘played’ with me

@Beetrootcocoa my little girl does the same too, I have sat next to her but not too close and she will most likely push me out of her space a lot of the time, but some moments she will show me her animals, or have my hand to line them up as well. She also likes looking inside my make up bag and she will copy the applying lipstick if I do the same but it’s very rare as quite often she takes my whole bag and looks inside it and lines up the stuff from there.
I totally understand what your saying.

I have two autistic daughters and they are very different to each other. There are some similarities with your daughter but also opposite behaviour eg one is fine with eye contact, has hyperlexia and incredibly advanced speech from a young age. Autism is much too complex to generalise and sum up in many of the signs and symptoms that you see.

What other support do you have and other professional involvement? Sensory Occ Therapy and Ed Psych can be incredibly informative and help with ways to overcome and deal with issues. I assume you are under SALT? If not, that’s another good route to go down.

This isn’t what you will want to hear but generally the support tends to be a prolonged fight to get, minimal and difficult to maintain unless to go privately.

I did baby signing with my kids long before I discovered that they were autistic.

They're teenagers now but they still sign to me when they're feeling overwhelmed and can't talk.

It's been a Godsend, especially with my son towards the end of a meltdown. He will sign to tell me what he needs to help him calm down.

Also, during meltdowns, I have learnt not to talk to him, touch him or ignore him. I basically have to just sit there and watch. However, by doing this, I have learnt to spot some very subtle clues as to what the problem is, stuff that would go over other people's heads.

@TheSnowyOwl her nursery is very supportive alongside the alenco support, we are under SALT we have just not that long ago completed bulk block sessions. We are seeing paediatrics next week due to her also having absent episodes/seizures she goes blank for up to 40 seconds at a time numerous times a day. And we have the support from the health visitor that has sign posted up to community groups that support families with disabled children. We are waiting on the neurological pathway team to see her now to assess her.

@PurplePink45 thays really helpful, I have to make sure she doesn’t attack my 2 year old so when she’s having an extreme meltdown I wrap her in a blanket and she smooths it over her face to calm down, she’s done the blanket thing since she was a baby, it’s very comforting to her.

Amazing post.

The other thing I've learnt is to not give a shit about what anyone else thinks about the way we do things as a family...

10 year old in a buggy? Means we can get out of the house.

Eating in the bedroom? Child is fed and not having a meltdown.

Having a body wash instead of a bath or shower? Still got a clean child!

Can't cope with strangers in the house? We don't have people over as often or only have them over when the kids are at school.

Child can't cope with cleaning teeth due to sensory issues?.Buy value ones from a supermarket or a toddler chewy brush and let them chew one. At least it's better than nothing!

We've learnt to march to the beat of our own drum and do what works for our family.

Hi OP, apologies, I don’t have much time but didn’t want to read and run.

I’m an autistic/ADHD woman - I am a carer for others, I have a long-term relationship, my own DC, and my own business. Autism looks different in each person.

I have boy/girl twins who are now 14 yrs old. Both are autistic (plus various other diagnoses).

My DS has high needs. My DD masked very heavily for years but had higher needs than anyone realised.

I imagine you want people to tell you whether your child’s behaviour sounds like autism? If so, I can remember feeling that way too. Not knowing is really hard - sometimes just getting the diagnosis do you KNOW can be a big relief.

None of us can say for certain because it’s possible you’re viewing things subjectively through the lens of your understandable worries. However to answer you directly, yes, I saw many of those behaviours you’re describing in my DC.

You’ve had some amazing advice from PP. @Bigcoatlady really nails the description of autistic interests and the intensity that many people (like me) experience.

Social stories and consequences didn’t work at all for my DC. We used PECs but ran into some difficulties as the pictures were misleading eg/the generic picture for dinner showed sausage and mash but I dished up pasta! Photos of real life things worked well for us. Timers stressed my DC out.

It’s a really tricky time for your DD as she’s experiencing big emotions but hasn’t yet got the communication skills she needs. That can lead to a lot of frustration.

Don't overcomplicate your communication. If you need to repeat something use the same words, don’t rephrase it. Use active instructions not passive as it’s easier to process eg/say “please walk” rather than “please don’t run”. Short phrases will be easier for her to process - this won’t stunt her communication/language skills long term but will help her now.

As others said, learn her world. Learn how she sees things. It’s the single biggest thing you can do to help.

Also, try not to worry. We had some tricky times but my DC are happy, beautiful children. If she is autistic, it’s just a different path and hooking up with a tribe of other SEN parents will be an enormous help.

This turned out slightly longer than planned 😂😂 But I will pop back later to catch up. Theres lots of very wise women on MN who can provide excellent help and advice 💐

Also, keep an eye on your younger child. Siblings are 50% more likely to be autistic too.

My eldest we suspected from age 6 and diagnosed aged 8. My youngest was so different but was still having toddler tantrums (or so I thought) at 7 and it was only when I wondered out loud to the paediatrician that he saw for something else that the paediatrician said "Of course his autistic!' Came as a complete shock as he behaved so differently! Diagnosed aged 9...