When did you start to notice traits of autism in your DD?

[thisisasurvivor]

Hello all

Asking this because I read recently that it is more noticeable around 5/6
Not sure how accurate that is

Just got me thinking
This weekend my DD was covering her ears every time we talked
She is 5
Never worried too much before

But

She is such a picky eater and struggles with others at school xxxxx

Hi op, I have 2 dc, my son is 20 and my daughter is 12, both are autistic and both are very very different.

in my family we have a large number of children with asd with varying degrees of severity. I suspect a few of the adults are too but none have been assessed.

I was diagnosed with ADHD in May after a doctor at Alder Hey questioned if I was on the spectrum myself after attending an appointment with my ds about 4 years ago. When receiving my diagnosis I was advised that I also be assessed for autism and am now on the adult pathway.

back to my dd. She’s extremely intelligent and in top set for everything in school, has also decided on her GCSE’s, A levels and where she wants to go to university and what to study ( history at Oxford 🙈 ) and I’ve no doubt she will do it.
my ds was diagnosed in 2011 when dd was a baby and I was mindful not to compare them
both and as it was they were so different.
dd was talking in sentences at 15/16 months where ds hardly said a word until 2.5 years but ds was toilet trained far earlier than dd was.
I didn’t think anything until I noticed she was obsessive about lining up her toys at around 3.

she sailed through primary until year 4 and her class went on a residential and her class teacher was her group leader. When we got back he said he had noticed a lot of things in dd and I told him I had my suspicions too but nothing “obvious” and she wasn’t having any issues in school apart from having one best friend from reception who were very attached to eachother. Then covid came.

fast forward to year 5 and i asked that she be assessed and it took ages and she was only put on the pathway in February of year 6 with a 20 month waiting list. She was assessed a few months ago after 16 months and diagnosed a few weeks ago.

her emotional regulation is poor as is her eye contact and she has severe social anxiety.
she picks at her skin and has many ocd traits. She’s very aware she has asd and said she has masked it for years.
she said covid was amazing as she didn’t have to bother with people.

I never thought about it until school mentioned it when she was around 7 years old.

She slept well, ate fairly well. Wasn't fantastic at socialising but would play alongside children.
The only 'sign' i cam think of is she was terrified of hand dryers! She also wasn't potty trained until 3.5 although that's not unusual. She also had some speech and language therapy but so did a lot of NT children.

Took us 8 years to get a diagnosis as they kept saying yes/no/maybe.

Now she is 14 it's a lot more obvious, she rocks on her bed back and forth, does great at school academically but has no friends.

I now have another DD who is 2, and it's very obvious how different she is to DD1, hindsight is a funny thing!

I wouldn't worry too much OP, maybe look into a diagnosis but be aware for a long wait.

I get your point

But if I can get her more help then great

If I can adjust some of the things I do then why not?

I do see what you mean xxxxx

If a diagnosis was just a label it would be pointless.
If it allows (or fast tracks) excellent self understanding (and greater understanding from your nearest and dearest), which in turn allows you to become a superb self advocate and be able to navigate life taking into account your strengths and weaknesses without being thwarted by unknown obstacles then diagnosis can be a force for good.

It could just be hyper sensitive hearing....

It's not labelling kids. It's trying to work out how to work with any difficulties they have, how to ease this life fir them.
People with asd often say they felt a huge relief at diagnosis... How to get support and adjustments in schools and how tp level them up if needs be in the eduction system.
It's vital in the education system to have an awareness of the child's needs because unfortunately many teacher don't understand various sen so they need support to help your dc as well..

Agree
Or the trauma of my abuse in pregnancy and the abuse we both faced for the first few weeks of her life

Where to even begin

How to help them regulate
When to offer them out

It also could help a family if they or school apply for ehc

At 3 or 4 I had an inkling. Took until 8 to get a diagnosis though.

But you’ve got through 33 years and coped in a job etc. for those on the other end of the spectrum that would be impossible. I know it sounds horrible but it makes me want to cry when I see everyone associating autism with this late diagnosis rather than than the completely non functioning type

You mention trauma and I think that could be hugely important to unpick, because I'm only just finding out how complex trauma causes symptoms very similar to autism.

I was diagnosed with autism a few years ago after a lifetime of struggling. It was a huge relief, it gave me an explanation, a legal defence at work, a massive autism community online, and I was grateful for it.

However in retrospect, at no point in the lengthy process did they ask about "adverse childhood experiences" or possible trauma causes for my behaviour. I'm only learning about these things now.

I meet 5 out of 10 of the ACE criteria, and I wonder about the validity of the diagnosis I received. I'm sure the two conditions can be comorbid of course, or being autistic can make you more susceptible to trauma, but the diagnosis method for all these things are external assessments which effectively means a very educated guess.

For your daughter, if you have the resources, I wonder if you could also look into starting child-friendly trauma therapy, meditation, tai chi and kickboxing classes while you seek further diagnoses and explanations to support her? These are all things that supposedly can help.

I noticed signs when she started school at four. (We lived in the Netherlands at the time.) I fought with my DH until she was 16 when there were some symptoms that couldn’t be swept under the rug any longer. She is a super-intelligent, highly-academic kid who is unable to visualize or dream. She is “clunky” socially and she toe-walks. She is typically “Aspy” and has had a lot of intensive counselling which has been both expensive and difficult for her. This has not changed who she is or how anyone feels about her, but she knows she has limitations and needs to pay attention to how she comes across if she wants to live outside her family. She’s 19 now and doing really well socially. I’d say she’s blossoming.

Can I ask what these things were?

ASD is exactly what it stands for; a spectrum. I firmly believe every single person has an element of Autism, but it is whether there are enough elements to become a spectrum that can become problematic which sets the difference.
The spectrum is enormous. What one child might despise another may be able to tolerate, yet both may be diagnosed with ASD based off other characteristics present.

Dd2 was showing what I believed to be signs at 2.5, yet her HV check deemed her as fine. I pushed though, and a HV came out and did the assessment. From this, they agreed she ticked the boxes to be referred. It has taken two years of community paeds, salt, specialist community play nurses, autism assessments and general senco assessments but in March this year she was diagnosed (she is 6 now).
The early signs for me were that she would only talk to people when she wanted to, wouldn't say goodbye to anybody (not even me), had to have certain foods (billy bear ham only, strawberries, grapes etc) and if they weren't prepared correctly she wouldn't eat them. At nursery she wouldn't play with other children, and if she hurt herself she would just sit and cry, she never sought help.
Even now age 6 with the diagnosis they believe she may have selective mutism too, but she is starting to come out of her shell a bit at school. She talks to people on her own terms though, if she doesn't feel like talking she just wont. She's also extremely blunt and matter of fact about things, like she will say "that persons really fat look" within earshot and no matter how many times I tell her we can't say things like that it doesn't compute bless her.
She doesn't like putting clothes on over her head either, this is a big issue for us and we hope her DLA claim will go through soon as clothing is a nightmare. She's very picky with textures of material and labels too which doesn't help.
All this being said about my dd2, her cousin is also autistic and struggles massively with keeping friends, is violent, life revolves around games and he can't wear any tight fitting clothes.

Thank you so much @thisisasurvivor for starting this thread and thank you to everyone who has added helpful comments - reading the comments on here has made me well up and feel like I am not imagining things with my own daughter!

She seems to be struggling more and more the older she gets (she's currently just turned 6) and this manifests at home with worsening meltdowns and behaviours that can include violence and just sheer rage.

We have always just accepted she has quite severe ADHD despite not actually being diagnosed yet (we are in a very bad area for diagnosis) and this has been taken as a given by her school and previously her nursery. All of the balls are already in motion to try to get a diagnosis and more support for her however over the past year it's been getting more and more apparent that there could perhaps be something else. Obviously hindsight is a wonderful thing but there are lots of other things over the years that had been ringing alarm bells.

To read a thread like this at this time has been a god send for me as I often feel I am struggling to keep afloat and parent her or I am getting everything wrong; that I should have noticed sooner.

There are lots of things from a young age that could point to ASD for my DD but the things that have been ringing the alarm bells in my head and triggered this are her extreme meltdowns, struggling in busy environments, stimming, reciting the same phrase or words under her breath, some sensory issues, anger, her voice (I can't explain this one - she often seems as though she is "acting" a voice or tone of voice.....I could continue.

Having read this thread, I feel less like I'm picking holes in my own child and that I'm doing the right thing in pursuing this alongside the ADHD

I don't want to label my child, I want to help her and understand her. I want her to have every opportunity to achieve what she wants and it's very apparent that if you are ND then diagnosis can be key unfortunately!

Thank you for sharing this

So very useful

Thank you all for sharing also

This has been hugely helpful

Glad it helped OP. I think we're only beginning to understand about the effects of stress in childhood on developing brains.

Whatever happens, she's lucky enough to have a mum who's worried and doing her best to help - that's what will make a real difference in the long run.

Thank you so much

I could be wrong
But I think it could be:

1. trauma
2. Covid isolation knock on effect
3. living in a rural area and lack of access to peers

Strange because we got to spend time swimming earlier and she made friends right away
Lovely eye contact

ALSO:
I think the abuse I suffered in pregnancy from week 3 to the day we left when dd was aged 7 weeks will have taken its toil also a mother who was so traumatised from everything I had really bad days following the birth

Gosh it's never easy

And sending good wishes to all the other posters also

I'm sorry you both went through so much. it would make total sense that it's still affecting you both.

I've pm'ed a list of some of the trauma books and resources I've been exploring lately in case those help you too.

Whatever the "diagnosis" ends up being, the good thing is there are lots of sensory things for both that you can try to help her.

Eldest was quirky. Very bright. Taking at 2 and I mean proper talking. Not just cat, dog. Very good with maths - it was self learning and obvious. Struggled socially - very rule bound - totally inflexible around rules or logic. Eg hospital at 5 for some tests - literally arguing with the doctors eg I don’t give consent etc my body, my rules- blood is supposed to be inside not outside, why open the skin to infection. Exhausting on every level mentally - reading age of like 18 at like 6. I thought bright and quirky. As they grew older it was like Sheldon from the Bing Bang - took everything literally unless told it was a joke and then went he he. Socially they have found their tribe but was exhausting and is. Reluctant of school to do anything it was noticed at primary and they were given books on social and emotion skills and a TA to do work with them - they read the book overnight and then followed the rules etc and same on year 7 and 8 diagnosed in year 11. But the school weren’t interested - head pupil, no behaviour issues, straight level 9 in everything - help any teacher or any pupil. It’s exhausting. I’m sure they will end up as PM or whatever one day - even drafted their own brexit agreement with the EU and send the huge page document to the government etc when like March 2020

Youngest one had other medical needs which I felt masked something. Sensory was the opposite of another poster - socks on constantly. No talking, no reading but takes everything apart puts it all back together eg locks at aged 2, pulls every board game apart, learns all of top trump cards off by heart and can memorise every single one and every fact within a day. Will play one song and learn the lyrics and then play it thousands of times. Everything is literal. Eg stand on that spot, they will get down on the floor looking for the spot and then stand there until told to move. Only likes the same food day in and day out. Sleeps two hours on and two hours off and has done for years. Again somewhat gifted at maths, chess etc no social skills looking back without the high medical needs for the first two years - it would have been obvious at around 2/3 but was diagnosed at 6.

It makes you want to cry that autism affects people differently? Don't be ridiculous.

The things you mention are sensory based. Try to offer an environment she can retreat to with very little sensory information to process. Minimal wall deco, painted walls, pastel colours, no wallpaper design, soft flat textures on textiles, few Primary colours. Less to process.

Great tips @PTSDBarbiegirl

She is managing the new school year quite well

OP - i know this thread is from a few months ago but if you are around can I ask you how's your DD now?

Interesting what you said about childhood trauma, is there any info on this?