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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

If this is Autism?

75 replies

Aswad · 26/08/2020 00:49

I know every child develops at a different rate
I know not all Autistic children display the same traits
I know I should see a specialist (we’re on a waiting list) but I really need some answers, please!
My daughter is almost 2 and a half
Has never pointed
Doesn’t look where/when we point
Doesn’t speak (not even mama/dada)
Doesn’t imitate our actions eg clapping, waving, pointing
Doesn’t wave hi or bye
Was a late walker? started walking around 16months
Doesn’t answer to name, never has
Randomly laughs to herself!
Occasionally walks on tiptoes. Maybe one very couple of days for about 2/3 steps
Chews on clothes . Usually the collar
Puts things in mouth
Hates having teeth and hair brushed. Like HATES it
Is good with food I make so no issues around that. Not great at nursery though
Instead of pointing she’ll take me to what she wants e.g her cup of water. Will bring me what she wants occasionally eg iPad or a book
In nursery no parallel play, will only play by herself

Loves being read to. Will sit still if new book
Happy child so will laugh if you smile at her
Likes being chased but won’t attempt to chase us
Doesn’t shy away from affection. Loves being held and cuddles
Hearing fine as understands about 5 words and will respond to those
Sleep wasn’t always great but when turned two started getting better and now sleeps 8 hours straight at night and 90 mins during the day. Which is not enough when combined

Please give me your thoughts. Did any of your children display these signs? Did it turn out to be Autism/delayed development? Did they outgrow any of it?

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Haworthia · 26/08/2020 00:59

It does sound like she has a lot of autistic traits OP. But try not to panic and catastrophise. I have been in your shoes and I was, understandably, really desperate for my son not to be autistic. I clung to all the well meaning things people said to me (like, he would wake up one day exploding with language) to the extent that I didn’t seek enough help for him. I was just waiting for him to catch up by himself... he didn’t.

You will get people yelling you about children who didn’t utter a word until the age of four and they’re neurotypical (personally I think they’re probably in denial but hey Smile).

I came to terms with my son’s autism when he was four (waited another full year for the official diagnosis but that’s another story). I am at complete peace with it now. He is amazing and so is his brain. I wouldn’t change him.

Stompythedinosaur · 26/08/2020 01:02

ASD is really hard to diagnose under about 4.

Sometimes sensory issues become less pronounced as dc get older.

There's a lot there that would make me pursue an ASD assessment, though.

I work in a team which diagnoses autism in children, amongst other things, and i also have a dc with some strong ASD traits, though no current diagnosis. I found my dc's sensory difficulties became less when she got to about 6 (they haven't disappeared, she is just able to tolerate sensations she dislikes for longer periods).

CountessFrog · 26/08/2020 01:03

I’m on an autism diagnostic team and yes she does have a lot of traits. Haworthia makes some lovely points there.

Aswad · 26/08/2020 01:06

Thank you @Haworthia
I can’t help but think of some of the things I (think) I’ll miss out on. I’m a pessimist most time and my mind just keeps coming up with worst case scenarios
The thing is every child with Autism is so different so I can’t even imagine what she’ll be like! Will she be non verbal for life? Is it Aspergers? Will she be high functioning. I don’t think there’s an hour that goes by where I’m not looking at her and thinking pls pls start talking. Tell me what it is you want so I can help

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Notenoughchocolateomg · 26/08/2020 01:07

Definitely sounds like she is autistic. My son is and (still awaiting official diagnosis) but I know he absolutely is. He was very similar to your little girl with those traits. He has developmental delay/learning difficulties too. Like PP, I wouldn't change my son, he's absolutely perfect and who he should be. Read up as much about asd as you can and join asd Facebook groups..thry helped me so much in the beginning. Educate yourself on it so you feel confident to fight for your baby. Don't panic. She nay have sensory issues if she chews on her clothes. Look up sensory processing disorder online. My son has it. It often goes along side asd. Good luck

Aswad · 26/08/2020 01:09

@Stompythedinosaur so she’s also almost 6 and no diagnosis? Is it because they don’t want to ‘officially’ say it is the waiting list that long

I also forgot to add she will sometimes come up and bite us! It’s almost like something possessed her to do it and she physically cannot stop until she gets it out of her system

I’ve got a lump in my throat writing all of this because it’s really hard to deal with. You imagine so much for your children and I’m 90% certain there’s additional needs there but just need to accept it.

How did you all come to terms with it?

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CountessFrog · 26/08/2020 01:11

Autistic people are some of the best people you will ever meet. They are often very logical and they can’t stand injustice, lying Etc. They give honest opinions.

It probably all feels like worrying differences when they are so young, but sometimes autism comes with huge strengths that aren’t evident until later.

Aswad · 26/08/2020 01:11

Thank you @Notenoughchocolateomg
This is all making me feel a little less alone

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Aswad · 26/08/2020 01:12

@CountessFrog thank you, you’re right
She’s so lovely. She’s got the most wonderful, gorgeous smile and she’s so so beautiful (of course I’m biased haha)

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Crylittlesister · 26/08/2020 01:17

Regardless of whether it is autism or not, there are some things you can start trying, they will not hurt or delay her in any way and can be beneficial to ALL children.
Children with delayed speech - for whatever reason - need access to communication. This may be gestures, eg Makaton (watch Mr Tumble) or pictures. The pictures don't need to be clever printed stuff, they can be photos, drawings or from a print out. You need your meaning to be very clear and a gesture or picture merely reinforces, it DOES NOT stop the understanding of spoken language. If she understands what the gesture, photo or picture means, she may be able to use it to show what she wants until such a time as her language might develop.

Something to chew may be useful for her. Some children respond really well to chewy tubes, chewy buddies, chewellery...
If you are on FB, Gina Davies has been doing an excellent series of videos on how to support sensory challenged children with things like teeth and hair brushing. She uses 'autism' but the principles are not limited to children with autism, they are very helpful pointers.
She may want to play alone, and that's fine, but it doesn't mean you are not allowed to play alongside her. Be fascinating, use the most interesting toys and resources and be incredibly interested in what is happening. Model active, happy, engaged play. She has lots of social skills, so do not shy away from encouraging them.
I could bang on, but shan't! I know it's not the response you wanted, but noone can answer your question definitively other than the professionals who will assess her.

CountessFrog · 26/08/2020 01:18

Excellent advice there

Aswad · 26/08/2020 01:23

@Crylittlesister
Thank you so much
My friend mentioned PECS and I need to get some cards
You’re right I am scared she’ll rely heavily on those and won’t want to speak. But I will definitely give it a try
I’ll check the FB suggestion too
Thank you for taking the time out to reply

OP posts:
CountessFrog · 26/08/2020 01:30

Research PECS though. It’s not just using pictures. It stands for Picture Exchange Communication System. You exchange a picture for an item.

TheSoapyFrog · 26/08/2020 01:54

My son is 6 and was diagnosed with classic autism and global development delay just before he turned 3. An awful lot of what you have described is familiar to me and my son is/was very similar.
I've come to terms with his diagnosis now. I admit there was a time when I grieved for the child I thought I would have and the life I hoped he (and I) would have. But I've realised they were my dreams and not his. I will do whatever I can to ensure he is happy, loved, healthy and safe. He is perfect just as he is.
I have no idea if he will ever speak or be continent. He has reached an age now where his GDD diagnosis can't remain and will be replaced with an intellectual disability. I am sure he will never be able to live independently though and will either live with me or in a residential home.
At this stage PECS hasn't worked for him, he cannot grasp the concept yet so I rely on him doing things like bringing a cup to me for me to fill up. He needs me, and others around him, to be able to interpret his vocalisations, gestures and body language. You really have to listen with more than just your ears!
But keep pressing for an assessment. It's much better to have an early diagnosis.

Gingerfish91 · 26/08/2020 01:54

It does sound like she could be on the spectrum. I have a severely autistic son who is now an adult. He started assessments at 2 and was diagnosed officially at 3, we knew from about 14 months though. My daughter was also Very late with every aspect of her development. Didn’t utter a sound until she was 3. She didn’t start talking in sentences until about 4 but no one but us could understand her. She was very late rolling, crawling and walking . However I was never worried as she understood everything we said to her which my son never did. His behaviour was great, he was almost too easy.

DanceMonkey19 · 26/08/2020 01:59

Your dd sounds very similar to my ds, aged 2.8. We've started private Speech and language therapy as NHS is just a review every 8-10 weeks. At the moment working on interaction and attention skills. I'm finding it hard as I'm having to do all the work to engage him and its hard to keep his interest but the more we do it the better he'll become.

Has your dd been referred to speech /OT/Community paediatrician? I totally understand how you're feeling. I'm terrified that he'll never speak

WelcomeToGreenvale · 26/08/2020 02:14

Please don't take anecdotes as evidence, please don't think in terms of "high/low functioning". The only people who can give you advice are medical professionals. They're who you need to be talking to, not Dr Google. For what it's worth, I've worked with children who sound very similar to your child, some of whom have been diagnosed with a disability, others who have come on to develop along with their peers.

Please don't catastrophise about your daughter's future.

ShastaBeast · 26/08/2020 02:16

Not much advice to give, just a teeny bit of understanding. It’s really upsetting and frustrating waiting on assessments and so hard seeing other children and comparing. My DD aged 10 was recently diagnosed, already had ADHD. It’s a shock to get the diagnosis even if expecting it. Fortunately she can pass for a typical but quirky kid and is very loving and empathetic, perhaps too much at times.

How long have you been waiting for the assessment? I’m sure there is support and plenty to help her development as she’s so young. I’ve not done much research as I was burying my head in the sand.

WelcomeToGreenvale · 26/08/2020 02:16

PECS and other language-adjacent aids like Makaton will NOT stop your child speaking in their own time with their own ability. They give them the ability to communicate with you while they cannot speak.

MsShopper · 26/08/2020 02:20

My DS had virtually all those traits at 2. I requested a SALT referral, he had early years support at nursery and, through that, a referral to a paediatrician.

His progress was slow for a long time, but the SALT techniques helped and by 3 he was talking in 2/3-word sentences. Around 3 yrs, 9 months he got his first ‘green’ Wellcomm score and was discharged by SALT, and many of the ASD signs had resolved themselves. Now he’s 4.5 and a confident, chatty, affectionate, funny and quirky little boy. (“Quirky” was literally the conclusion of his paediatrician at his last appointment in March, though she wants to see him again to see how he settles in to Reception. So it’s a bit of a ‘wait and see’ situation.)

I still feel like he could be on the spectrum. He’s still a bit behind with his conversational and expressive language, he can get fixated on things and struggles sometimes to manage his emotions. And when he was last in nursery (March) he definitely hadn’t developed the same level of social interaction / rapport as his peers. So school will be interesting. Also interesting because over the past year his literacy and numeracy skills have gone off the charts. If he ever is diagnosed ASD, I think they’d call them splinter skills. All I can say is he can read at aged 8/9 level and knows the square root of 1,296! I have no idea what his teacher is going to do with him. Grin

Anyway, I just wanted to share because I probably could have written your post a couple of years ago. I spent many, many nights Googling ASD red flags and doing M-CHAT tests. Every child is different, and of course I don’t know your DD’s journey. But I just thought you’d like to hear that good progress can happen.

Rosebel · 26/08/2020 02:44

At least getting a diagnosis early means she'll get help. My daughter wasn't diagnosed until she was 11. It took 2 years.
When she was young she covered a lot of her traits by copying her sister, cousin and friends. The only thing was that she was a late talker
Then at about 8 she was badly bullied and all these angry meltdowns and tears began. It took forever to get the school onside (they refused to believe she was autistic) but we persisted and got her diagnosis just before she started secondary school.
It's easy for me to say don't worry but a lot of children do cope with autism and do well. I'm concerned my daughter may never get a job (struggles academically but not enough to ge help), has no friends (socially and emotionally about 8) and may struggle to have a relationship. However there is no guarantee these things will happen.
I try to focus on today rather than tomorrow and for us things are better. We rarely have the huge meltdowns now and seems happier.
Try not to worry. If she is autistic it's not the end of the world at all.

DamnYankee · 26/08/2020 03:21

Not a doctor. Not a child psychologist or psychiatrist.
Long time teacher and now a speech-language professional.
It does sound as though she needs a thorough assessment.
I understand the worry about relying on cards or Augmentative and Alternative Communication (AAC). :/. Get some help from an SLP. They are awesome!
Sleep actually sounds ok - if unbroken.
Don't catastrophize.

Coolhand2 · 26/08/2020 03:38

She sounds exactly like my ds, would not say mama or point, he would take me to what he wants, no biting though, he wasn't aggressive. He was diagnosed with mild autism at 2yrs and his therapy started just before 2yrs, he is now almost 6yrs. We did therapy plus signed up for Gemiini (check it online, it's virtual therapy for autism. it's awesome, I highly recommend it. He would watch the videos in the car on the way to daycare and I would put it on our tv in the background). He started talking at 3yrs old and he could read too, I thought he would never talk. But exactly 3 years he started talking, now he talks a lot. He still chews on his clothes sometimes and attached to some things he likes and emotional too.

BlankTimes · 26/08/2020 04:08

This booklet may help you understand her seeming 'need' to bite (look for chewelry and see if she'll bite a suitable piece of that instead) and likely a lot of other things too.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

There's an autism screening test for kids at 24 months called MChat-R, available online, but do bear in mind it's only a screening for possibility of ASD, it's not diagnostic, no online tests are diagnostic.
Also all general autistic traits and behaviours you hear about are based on the male presentation of autism, so as you have a DD her presentation could be very different.

Aswad · 26/08/2020 05:06

Thank you all for responding with your own experiences and sharing tips. I hope your DC aren’t the reason you’re messaging so late!
I jinxed myself, DD has been up last 2.5 hours. First screaming and crying, then screaming and laughing and now she’s a bit quieter. My head hurts!

It’s interesting how everyone’s experiences are so different. There’s literally no two children with exactly the same signs it seems

I’ve done the online assessment and she’s ‘high risk’.

We’ve asked for an assessment from before she was two. I remember being told to wait until she’s two and we’ve still not seen anyone. Our health visitor has been all but useless. Missing appointments, saying she’ll book us in and not call back, promises after promises and we’ve just given up on her. GP we’ve had to chase up every other day and in the last month they’ve referred to the child development team. Nursery have also referred us to area SENCO

Ok she’s back to laughing for no reason now

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