At breaking point- My 6 year old is probably autistic

[Willitalwaysbelikethis]

I am completely and utterly rung out by my child who we think is probably autistic. My husband and I are coming to terms that her behaviour is not developmentally appropriate. I feel beaten up both physically and mentally. I am really feeling very alone with this.

We have been reluctant to label her I guess, and we have good patches where behaviour is not so bad. It is possible that it could be ADHD and/ or ASD, and we are also looking at PANS and PANDAS.

My stomach churns when I collect her from school, I am knackered by spending my waking hours in a state of fight/ flight/ freeze as I just don't know what I am going to get, there feels like there is never any peace. I do not look ahead to the evening and think, can't wait to sit on the sofa because she is always awake, I have younger and older children but life revolves around this one child.

I feel bloody awful because I know I am not responding in the best way anymore. I just can't deal with anymore rage. When she is in good form it is like being blessed with a gorgeous ray of sunshine. The rest of the time is the pits and unfortunately that is where we spend most of our time.

At times like this I feel so lonely. I confided in my mother last week, but, true to form, I haven't heard anything from her since our chat. There is no support whatsoever. No offers to give us a break for a couple hours. Nothing. Over the years there has been zero offers to take my daughter out or sit and play with her. I know she is difficult but she is also lovely.

Aibu to feel so alone

I really feel for you and I imagine it’s a scary time not knowing what to expect and autism is such a broad spectrum you have probably come across people who really struggle with it in real life or online.

it’s a positive thing that you are aware of this early, please make sure you get as much support as possible, there are lots of support groups online and speak to your GP about putting you in touch with other sources.

My best friend who is closer to me then a sister has two autistic children, she struggled so much and didn’t understand a lot of their behaviours, she pushed for a diagnosis and now they are all thriving. If things are moving slowly you can use “right to choose” to speed up a diagnosis.

My DP has struggled all his life as he has a strong sense of justice and was called a “grass” as a child and he struggles to understand life isn’t always fair. He prefers his own company and doesn’t always act socially appropriately. He has lost jobs and people have thought he was a bit weird and struggled to understand him. His parents are likely ND and so they didn’t realise he was autistic as they thought/acted in a similar way.

I’m also ND so don’t pick up on it straight away but my best friend recognised behaviour her children exhibit. We looked into it more and he got a formal diagnosis, his life has changed for the better.

It’s the little things like being able to get priority boarding in airports, he struggles with noise and chaos and avoided going abroad until we realised it was an option. He also gets treated differently when he shares his diagnosis.

It’s the kindest thing you can do to get a formal diagnosis as soon as possible and educate yourself. Once you learn ways of dealing with a ND child you should find it easier.

It’s not the end of the world, everyone I know who is ND wouldn’t change it and are happy with their life. You just need to change your outlook and instead of worrying and panicking to find the best ways to deal with it for all of you.

I don’t have much experience with autism in children but I’m sure people will be along soon to give you some great advice and guidance on where to get support.
Mumsnet has a bad reputation for women being bitchy vipers but I find in situations like this you will get a lot of useful information and advice.

Ok, now you've identified that she may be autistic or similar you need to learn more and adapt your parenting.

The rage isn't aimed at you, it's a build up of frustration and overwhelm.

When you pick her up after school hand her a snack, a drink, minimal talking, ear defenders or headphones with favourite music on, possibly straight to the park to get some energy out then home. She has had a massively stimulating day you need to manage the sensory input and block out what doesn't work for her and give her more of what does - black out tents, rolls of cheap lining paper for ripping, spinning chairs, wobble boards, weighted blankets / vests, light up balls, light projector, slinky etc. Do not make any quick trips to the supermarket etc she won't be able to cope after a day at school.

My teen DD takes at least an hour after school to regulate, I have a snack, a drink and her n/c headphones charged ready for her and her favourite lounge wear then leave her to it until she's ready to come out and talk and she doesn't experience meltdowns or rage she's more of a shut down type person.

Factor in rest times, Friday night - Saturday afternoon is for rest as is Sunday evenings. On a day out we do morning + lunch or lunch + evening we don't do all day events and always stay over at a Premier INn (as always the same) and have a travel day if possible.

I just wanted to say thank you so much for your thoughtful and useful replies.

It has all hit me a bit hard but I'm determined not to wallow. I think it's 6 years of me constantly saying "she is fine", "all 6 year olds do it", "she's had a really tiring day" and myself being in a constantly hypervigilant state, trying not to cause another meltdown and constantly defending her behaviour to other people. It's worn me down a bit. It's like I've had to mask it all....and now I can't fake smile a moment longer.

And I was fairly recently diagnosed with ADHD, the family I have told have been completely unsupportive- being the family scapegoat and just a bit "difficult" really suited the family narrative. The more I see myself in my daughter, the more I kinda understand. Perhaps her behaviour is dysregulating to me more so because of the ADHD- I don't know much about it and think I need to start looking into it.

We have a go appointment tomorrow.

Thank you again. I particularly love the suggestions regarding after school errands and headphones, it would never have occured to me.

Hi op sorry to hear this

Do you want to talk about your DD’s behaviour?

this current thread might help -

https://www.mumsnet.com/talk/parenting/5086841-parents-of-neurodivergent-dc-how-have-you-altered-your-parenting?page=2&reply=135752245

Hi OP. My son is 6 and I really related to your post. My husband is probably autistic himself - he had similar behaviours in childhood and recognises traits in himself now that would point to autism.

My son also has ups and downs but the biggest issue is the rage. I feel like we just never left toddler tantrums, they got worse as he got older. I've been struggling a lot lately too because I think over the years I have thought there was a possibility that the behaviour was in the range of not al for his age and as he gets older it's less and less likely that he will grow out of it.

How is your DD in school? Our DS is fine in school most of the time. He is also working at greater depth in a class with a generally high level of need. His teachers look at me like I'm mad when I describe his behaviour at home and I think they think I'm just useless because they don't see the problem!

@Rambly Same! There are no particular issues at school- she causes no trouble- although she has terrible separation anxiety sometimes. Teachers are also surprised by my dds behaviour- I suppose we could call it masking? This is also why I am looking into pans/ pandas- because I believe she has "flare ups".

I can really relate to the tantrums not getting better, maybe even worse. I think that's what I have really struggling with. When she was three/ four I could grit my teeth and tell myself that it would be so much better in a year or two. And now I have realized this is it. It isn't going to be getting any better any time soon.

@Showerscreen thank you I will take a look :)

You should also contact the school and ask for a meeting the senco and class teacher to discuss your concerns. Be prepared for CAHMS to reject a referal for assessment, in our area only children in crisis are deemed to met the threshold.

Are you me? 😅

My 9 year old DD has just been accepted onto the CAHMs waiting list for an autism assessment. I was diagnosed with ADHD in 2022 and have an ASD assessment in July.

It's only been since starting the ADHD meds and a lot of autistic traits surfacing that I even began to ponder autism for myself and then my daughter

I echo another poster who said right to choose, I wish I'd gone down that path for my DD as I've seen it is so much quicker!

Prior to pondering autism, my daughter got a little support from school but for her emotions, not ways to cope, I dreaded phone calls from school, knew it was going to be somthing terrible. If she wasnt hurting herself she was having a meltdown in another way and then coming home exausted. I just could not understand how she was so different at school, now I know its autism, I can see she just really struggled

Since a horrible incident in school they have really upped their support and she is like a different child now. It's been at least 4 months since she hurt herself at school and she has gotten so much better at not lashing out at home too

I have really tried to change the way I parent her now and give her a lot more patience, warnings for transitions, more sensory things ect, headphones she likes..... she loves bouncing on the trampoline, take more interest in her special interests, explain things more for her, give her more time, theres a lot of little things I cant think of them all now but every small thing has made a huge difference,

School treat her like the other autistic children now and she gets a lot of supoort and honestly shes like a different child

myself being in a constantly hypervigilant state, trying not to cause another meltdown and constantly defending her behaviour to other people. It's worn me down a bit

It is very stressful. My DD is on holiday with my sister at the minute, she goes once a year and I forget every single time, how much easier life is when she isnt here 😭

I hate to say it and i love her so much and I'm glad shes with me, but it is incredibly exhausting and It is just none stop.

I am constantly on edge trying to manage her moods, emotions, explain things, listening out for her arguing / hurting her brother. Not being able to relax when its quiet incase shes hurt herself. Them not being allowed to play in the garden together because she always hurts him, her staying up till 3am every night, I'm exausted.

Me and DS have been to school on time every day this week, we are always over an hour late when DD is here.

It is exhausting but getting them the right support makes me the world of a difference. To us and them. I know I've just listed off some negatives but you'll know yourself just how lovely they can be.

My dd is like jekyll and hyde. She can be so loving and kind and then the other side is completely different.

Her behaviour is a massive trigger for me and that's because I understand how she is feeling, i really do. But I've always masked, I've never learnt how to support myself properly ( learning now ) so the meltdowns and stuff, I get it but I've really struggled how to deal with it as I've never dealt with them for myself, just kept everything inside and hated myself for years 🤦‍♀️

My dd (7) is also likely asd (assessment scheduled). I also struggled for years with the ‘is she/ isn’t she’ - lots of behaviour just on the border of ‘normal’, and it wasn’t until the past year or so that it became clear that she was definitely different from peers. I joined a send parents group at our school, and it was actually really liberating just being able to say out loud that I suspected asd.

we also had lots of self-regulation issues, and one thing that helped (no diagnosis required) is getting support with that specifically. We had play therapy with a SaLT recommended by our school (paid for privately) but I think there are other disciplines that offer this sort of therapy. Basically helped her develop a vocabulary and way of naming what she was feeling, as well as help her identify what she was feeling / when she was losing regulation, and then helped her identify some strategies for self-regulation. We still have meltdowns, but they are less frequent and less intense. There were some recommendations for school to help alleviate stressors, and over time I have changed my parenting as well to be more low demand, which also helps.**

@AbsolutelyOverwhelmed91 thank you for sharing. I'm sorry it sounds so tough. My husband has worked with special needs in an educational setting and I think, because she is so "well behaved" at school that we just chalked behaviours up to everything but autism as the kids at school which had autism/ADHD presented very differently. I suspect many children fall through the gaps this way. I will also look at right to choose so thank you for the heads up on that.

@Labraradabrador thank you for that I will look into play therapy. We are happy to pay for assessments/ support if we don't get anywhere through the NHS. I will also look into low demand. We use a star chart which can be useful but I wonder if just lowering my expectations and nagging will help?!

Anyway if no one's looked at pandas/ pans it's very interesting- it's only just starting to be recognised in the NHS.

@Sunnysummer24 thank you. The class teacher is aware now and has informed our senco. Whilst there haven't been major concerns there have been bits and pieces that have occured at school which may help paint a picture.