Worried about dd - possible autism

[Stephthegreat]

Dd is 9 and has been having increasing ‘meltdowns’ over the past few months. It’s got to the stage when I worry about doing things with friends or family as certain things seem to trigger her. The meltdowns are not typical tantrums, they are over things which I really don’t understand and she also is very literal about things.

She has some teddies that she is very fixated over, she gets upset if she can’t find them or if a friend picked one up to look at it she gets upset and worried. She also has been flapping a lot when home. We play board games together and do nice activities to distract her but she goes back to flapping a cloth around the room. It’s constant and repetitive, she seems to talking and playing but she gets angry if we try to stop her. It goes on for long periods of time.

AIBU to think there could be autism? My family feel it’s just a stage she’s going through but I’m finding her behaviour very difficult.

I would be raising these concerns with your gp if I were you. I think there is enough there to warrant investigating.

If she is flapping or swimming please do not try and stop her. If she is autistic she needs to do this to help regulate herself.

*stimming, stupid autocorrect.

My DD is autistic, it was such a blessing when we got a diagnosis and support after years of meltdowns.
She has PDA autism so can't cope with demands. Now that we have learned to reframe requests we all get along a lot better.
Take whatever support is offerred and ask millions of questions of every professional you come across.

I would speak to your GP, mine referred us to CAMHS who then referred us to a neurodevelopmental team who diagnosed my sons autism.
I agree with PP don't stop her flapping as she is doing it because she needs to.
Try and find out what could be bothering/ overwhelming her. You will have to make some adjustments and accept that 'normal' family things that other children enjoy she may not.
It is hard, and sometimes I get really upset that I don't know what the future is going to be like and that my other son is missing out sometimes, but all I want is for them to be happy, and they are most of the time lol

Thank you, I’m struggling with this so much. I took dd and her friends to the cinema today as a treat, dd insisted in bringing her teddies and got very upset when one of her friends wanted to look at one of them. She seemed to enjoy being with her friends though.

Before bedtime dd had been flapping for a long time then had an almighty meltdown (seemed out of nowhere to us as had been okay up to this point). This was triggered by dd looking in her purse and realising that there was not the same amount in there as before (she’d spent some money at school).

I’m not coping well, I got very cross with her. Afterwards I talked about it with family and my dsis said she felt dd had some traits of autism.

I will speak with the GP. Dd hasn’t got a speech delay though and generally seems okay at school, it seems like she only has meltdowns at home.

My DD12 has adhd and ASD. She does have over reactions and massive meltdowns at home. I just hug her. It stops pretty quick.

Get a referral and assessment done. If you can afford to go private I would be use the wait times can be long otherwise.

Meltdowns at home but not a school is very common. Many children 'mask' at school and bottle up their feelings all day, then they come out at home. Wouldn't hurt to make school aware of what is going on at home too, if only to see if there is anything they may have noticed.

Speech delay is only present in some autistic children, many actually learn to speak within Norman timescales, or even very early in some cases.

Each person with autism has different traits to another, so please don't think just because your DD does not have a particular trait e.g. speech delay, that it rules out autism.
Also, autism presents differently in girls.

This is a good overview the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Does she have any sensory issues, it may explain some of her meltdowns that you think are 'out of the blue'. This booklet's very good.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Please don't be cross with her when she behaves in a way that' you think is out of the ordinary, all her behaviour is communication, the main issue is that you need to learn to understand what she's communicating when she behaves a certain way. e.g. meltdowns are because she's overwhelmed and can't process everything.

dd insisted in bringing her teddies and got very upset when one of her friends wanted to look at one of them

To her, the teddies are a form of 'order' in her very confusing world and it comforts her when they are 'just so' She'll get distressed if anyone disturbs that 'order' because she'll then feel as though she's not in control.

Do contact her school and speak to the SENCO. Ask them to observe her at school and see if she displays any autistic traits. Very often a child can mask at school and they see nothing and tell you she's "fine" and can insinuate that your concerns are unfounded. Once more, that is typical of autistic behaviour. Schools only tend to notice autistic behaviour if it disrupts lessons.

If school are helpful, ask SENCO to write a short summary of their observations so you can take it to your GP with your observations - without your daughter present at this stage - and ask for a referral for your daughter to be assessed. Depending on your location, NHS waitlists can be a couple of years, so it's best to start the ball rolling sooner rather than later.

Could your dd be anxious? Just a thought to explain her behaviour. My dcs do still have tantrums or meltdowns and it can be hard some time to know if they are tired or misbehaving.

She has been anxious about her schoolwork but nothing more than normal.

She said to me after the meltdown while sobbing that I didn’t understand and that she’d had to ‘cope’ with her friends all day which I though was weird. She seemed to get on so well with them.

This morning I’ve woken up after hardly any sleep. I’m feeling more any more like I am not looking forward to the day with her, Christmas I’m dreading and just at a loss.

A few mornings ago dd had a meltdown because I’d come downstairs before her. I’d left her upstairs in bed sleeping while I made the dcs lunchboxes.

She was sobbing at the top of the stairs saying that I’d made her a promise to never come downstairs in the morning without her. I don’t remember this but do remember a few occasions in the past when she had a meltdown over something similar. We were late to school as it took so long to calm her down.

I have a son aged 9 who has autism. He attends a specialist school for children with autism. He is also obsessed with teddies! He would not want anyone else touching them. He brings one out with him everywhere he goes, like a safety net. They’re very comforting to him.

He is social to an extent and likes having friends but has a limit to how much time he can cope with being around them- it stresses him out. And afterwards he needs total peace and quiet to self regulate - for example we went on a day out to a zoo with a friend from his school yesterday and when we got home he sat on his iPad watching you tube until bedtime more or less without talking to anyone. He needed that time and space to be alone. I also have autism myself and I am exactly the same.

As someone else has said don’t ever try and stop them flapping / fidgeting or stimming. It’s their way of relaxing and calming themselves.

Ask the gp for a referral to a paediatrician and they can go from there.

In addition to some of the brilliant posts above you’ll have to consider - Has she always behaved like this?

If you’re considering assessment they’ll look for signs of differences since birth. In general it doesn’t just appear at age 9 although heading towards puberty can make ‘symptoms’ (for want of a better word) more exaggerated and heighten anxiety. It’s also worth considering, if your child is an anxious child, whether it could also just be the start of puberty which can cause times of regression into childlike behaviour and lots of crying and upset. My eldest struggled for years before her periods started.

watching with interest

My Dd is awaiting a private assessment for ASD.
She has had similar melt downs at points. Always very ‘held together’ at school.

She’s 13 now. Just wanted to say that even if there is ASD my experience with my dd hormonal changes also play a part and she definitely has phases of being much more sensitive and emotionally volatile.
So try to take heart, there will be ups and downs but here at least there are definitely easier and more difficult phases.

This sounds very similar to my oldest daughter: we are still waiting to see CAHMS more than two years after being referred by our GP. I would suggest asking for referral ASAP just to get the ball rolling. Part of the issue for us has been that she masks at school and so it has taken them a long time to take our concerns seriously. She is now allowed to take her soft toys to school, which does help a bit.

Also, I suspect that the lockdowns have made her less tolerant of different environments and situations. She has meltdowns more easily even if just visiting grandparents as she is away from her familiar environment/routine. It is very difficult to deal with.

In the Summer we went somewhere she'd been wanting to go to for ages and it was a massive learning curve. It was loud and over stimulating in places and we had to cut out certain things. Luckily staff on some attractions were clearly well prepared for this (I think this has improved a lot in recent years) and were incredibly helpful. This was when I realised that she probably wasn't just sensitive.

Definitely ask for a referral for autism through your GP. My dd was diagnosed aged 11. She had a row of teddies on her bed. If one wasn't in the right place in the row she'd meltdown over it. Autistic children can find it hard to be in social situations. My dd is better in a group with 1 or 2 but massively struggles in a larger group, she finds it quite overwhelming. Rigid thinking can be a trait of autism. My dd never had issues at school. There are private organisations that do assessments. I know the NHS has been using the Owl Centre to get their lists down with assessments in some areas.

Even for the private assessment (Lorna Wing) there is a 9-10 month waiting list.

My dn is waiting for an assessment. She has similar behaviour to your dd, she flaps with a scarf at home and so very much like behaviour of your dd. It would be worth speaking to your dd's teacher and your GP to work out the best path forward.

Venusmay and Alpenguin

Anxiety is often co-morbid with autism, the higher the anxiety level, the more observable the autistic behaviour.
Reduce the anxiety and the observable autistic behaviour reduces.

Parents of kids with ASD have commented that what OP has written is not in their opinion "only" anxiety-influenced behaviour. Autism in girls is very different (masking) to the male presentation and it's common for it to be overlooked by parents and school in childhood/teen years until the point where the child cannot cope.

She has social difficulties... The coping with friends comment.

What about communication and sensory?

What about routine? (Teddy bears being just so. Not coming downstairs first)

Make a list for GP.

Asap. Waiting list is loooooooooonnnnnggggg.

It's about the right age for a quirky kid to start morphing into an autistic girl because social demands and complexities are increasing.

If she is showing rigid behaviour and routines, describes a casual event with friends as "coping" and flaps and stims then I'd look into it.

In the meantime work with her behaviour, don't discourage it. Get her things to flap because it makes her feel better. Make a plan for the next day before she goes to sleep. A good one is laying out her uniform and place at the breakfast table because that way a lot of social decisions have been made and age can focus on the task in hand rather than "this skirt matches Kaylie's so Ava will be left out, this shirt has a scratchy label so I don't want that" sort of bullshit. After a social event, build in 30 minutes of quiet time with her special teddies (I'm an adult and I still need 45 minutes of quiet time to get over certain social events). Make life as certain as possible for her.

I was told it is very common for the signs of autism to become more apparent in girls around age 8-9years. This is also when it became more apparent in our DD. Girls are so good at masking and it seems at this point it starts to crumble a little. We had the most difficult year when DD was 9, it really pushed us to the brink. She is now diagnosed and we did get some help (admittedly not a lot!) but we have come out the other side and life is much better now. Her diagnosis also enabled her to have more support when she started senior school, she settled in better than we could ever have imagined and has a lovely group of friends.