Failing my autistic daughter, help me do better please!

[AnxiousPixie]

Evening all, don't know if this is in the right section, there are so many to navigate.

Thank you to can stay to read. I'm typing this on my phone at 1.30am on holiday as I can't sleep, apologies for typos. Hope you've all had a better Christmas eve than me.

I heavily suspect that my daughter is autistic. She is on the waiting list to be assessed, even with right to choose that's going to be a years wait. The more I read about it though, the more convinced I am.

I am trying to read all I can about parenting autistic girls but I feel so ill equipped to be her parent. I know I am failing her and am more than prepared to get flamed here for how shit I am doing. Go for it, you can't make me feel any worse than I do. I guess I am hoping that someone could have some helpful strategies that they can share to help me be better.

She struggles hugely with her emotional reactions, she has such a black and white view of what is just and finds it really difficult cope with anything she feels is unfair. This often comes to head when she is playing games or is asked to do just about anything, she will find a reason as to why it's unfair. I know she isn't doing it on purpose. I know her brain works different but that doesn't help even though it explains.

Two examples today...

We are on holiday at the moment. Were going to do an activity that she was looking forward to. It involved having to wear socks and trainers. I wasn't doing the whole activity so didn't have to wear socks. She melted down about the unfairness of her having to wear socks (not normally an issue) when I did not. I haven't even brought any socks on holiday with me so couldn't even comply just to calm her. 15 minutes of screaming in my face about how horrid I am to ask her to wear socks. I explain that it is the rules and she doesn't have to wear socks, but then can't do the activity. That enrages her more.

Her and her older brother (9) were playing a game. She decided it was time to change the rules, as she often does if she's not winning. He often just lets her win as it's easier but he was really enjoying the game today. She changed the rules, he didn't want to change the rules. She melted down to the extent I had to take her off the beach and sit in the room. Her older brother often takes the full blame in her eyes, which I also find really difficult as he is such a kind boy almost all of the time, and in many situations the only friend she has.

Those are just two examples but on top of multiple episodes of weeping about this or that being 'wrong' and the fact she finds it difficult to take turns in conversation, which manifests in a constant stream of her taking. Sometimes for hours with no break. It's a lot.

She cries a lot, at everything, and I get such sympathy fatigue by lunchtime that I really struggle. I get up every day vowing to do better but she seems to be able to drain every emotion out of me. I always have cuddles for her whenever she wants and needs them but I know she will be able to tell when they are full of tension.

This is the same when we are at home, so not extra disregulation because we are away. She actually often copes well with a change of routine if I prepare her for it. She seems better at school as she gets so engrossed in certain tasks but I think a lot of it is masking too, which then drains her so much she fully let's it all go when she's at home.

She normally loves the kids club on holiday for an hour or so each day, as she adores craft. I usually spend that time doing something fun 121 with her brother. But this time they are not sticking to the timetable so not doing the activity she expects, which she finds difficult, so doesn't want to stay.

I am on edge the whole time even when we are at home trying to catch a meltdown before it happens or constantly having to deal with one. I think it brings up some unresolved things from my strict upbringing that behaviour like this, even seeing her do it raises a panic feeling in me.

My husband is great and we do parent as a team but it is so hard. She seems to be better when she is 121. We have decided to try that tomorrow. I will take her for the day and my husband will have my son. We will swap the day after. But the fact we don't get fun time as a unit breaks my heart.

I end up with so much pent up emotion and stress from absorbing it all from her that I end up crying in the dark at night, as I am now. To my shame I don't always manage to hold it together and do shout.

She is only 7. I don't know how I am going to get though so many more years.

As I said above I know I am doing shit, and that a lot of this might even come across as me being selfish that this isn't fitting my expectations and a parenting experience. Flame away.

I guess I am just looking for anyone who can recommend something I can read to be better for her,or some strategies they have tried that have helped or just a helping word that autistic children have phases too and this won't be my life forever or if that is the case, how do I stop becoming and emotional shell of a mother that is no use to ether of my children. I think I'll see my GP about medication for myself.

Thanks for reading it you've made it to the end. Just typing it out has helped a bit.

it is hard. Im an autistic parent of a late diagnosed autistic daughter.

how I would deal with these scenarios.

the socks and shoes: we will have spent a great amount of time and effort making sure to find socks with as few bumps as possible and that trigger as little discomfort as possible. The same with the shoes. Along the way, many pairs will end up in the donation bin because they don’t make the cut. Finally we will have something that works and I will only stock that sock and buy that shoe in the next few sizes in case they stop making it and then hope she doesn’t stop liking it. Socks and shoes cause physical pain. This is just the reality. There is no getting around this. They are awful, horrible things that we must struggle and put on our bodies on occasion.

when she must wear socks and shoes I warn her in advance. She can remove them as soon as the activity is over and switch to her comfy shoes. She is never punished for losing socks. If she has to rip them off I just deal with that.

changing rules during play: we have a discussion about how she would feel if someone imposed rules on her. ASD children often have great empathy and feel things keenly, they just express it differently. Talk to her like she is an adult and can handle this discussion.

the kids club: this is just too much to ask. It’s a huge change in routine. If they aren’t on schedule, you have to accept she doesn’t want to attend. Many ASD kids hate these in general.

Absolutely re. socks. Horrendous things.

Regarding the kids' club, this would be a big ask even if you weren't already on holiday and out of routine: hours with unfamiliar adults and children and away from her family who are the one bit of security and continuity. Even if she likes the activity it's not realistic to expect her to go. If she wants to on a particular day then the time she is there is a bonus but should by no means be expected with you planning activities in her absence as you'd need to brief staff they should call you immediately if she gets upset and go and get her within 5 mins max, and let her know in advance that this will happen so she feels safe to try it if she wants to without being trapped there so has an exit route.

I am a lone parent and when I took my children on holiday this summer I hired a local nanny with experience and training in autism to come to the beach with us each day for 3 hrs. This meant if I wanted to take one child into the sea, or one child needed to go back to the hotel room for respite, it was manageable. I ensured we booked a hotel where the beach was a one minute walk from our hotel room, two minutes to various restaurants. And a swim up pool to the room so that if the children needed a quieter morning/ afternoon we could still swim/ one could swim and the other not. We got special assistance to get through airports without it being overwhelming.

It is still possible to do many things even with children with different and clashing needs, just takes more advanced planning to anticipate the potential triggers and more investigation to find the right hotel/ setup that will work, so it is manageable. With two adults to do it between you rather than one holidays are doable without being super stressful if they are planned in such a way to accommodate everyone's needs rather than expect some if the family to "just manage" and pretend to accommodate the needs/ preferences of other family members. That would lead to a miserable holiday no matter which way around that was working! And nobody can "mask" for a week solid, or more, in an environment that isn't ok for them!

I totally agree with the PP that you need to speak to autistic children far more like an adult than you would to an NT child their age. They need proper explanations and having a discussion with her about what works for her (when she is calm and relaxed!!) and what she finds hard so you fully understand the triggers - rather than guessing them - will make it much easier to make plans that work for you all better in future.

When it comes to meltdowns - although sometimes of course they will still happen - pre-empting them with tactics like the above is much better than trying to deal with the fallout.

You said she's good at masking at school (very classic for autistic girls in particular) so by the time she's reached meltdown point she is way past overwhelmed. The time to notice the signs of rising stress and take evasive action would be probably 2-3 hours earlier! Prevention is much better than trying to "manage" a child who has already been pushed far beyond what they can cope with.

Also obviously a smaller hotel so not very busy. Plenty of space on the beach, no crowds. And made sure the hotel would do room service breakfast each day so no crazy busy restaurant with a buffet to start off the day with children already totally overwhelmed before they've even eaten breakfast, setting up the rest of the day to be hellish! And a clear plan for each day explained the night before so there was some kind of plan to mitigate the change of routine.

All quite small things individually but put together made the difference between a holiday that would have been total hell and one that was actually really quite relaxing with very few stress points at all.

Also OP, does she yet know about autism and what it is? I appreciate you need to judge this carefully because she doesn't yet have a diagnosis, so don't want to tell her she is autistic if there is a possibility she may not be, but one of the hardest things many of those not diagnosed in early childhood go through is feeling like an alien, wondering why things other people seem to find so easy are so hard for them. Feeling that if they "just tr harder" they will be able to do it then feeling like a failure because they literally cannot no matter how hard they try. It can be so damaging to self-esteem. I know when I explained to my children (both younger than yours) about their diagnoses their main emotion was relief, to have an explanation for their differences and not feel ashamed.

It can be explained positively, even in more general terms about everybody being different and having some things they are brilliant at and other things they find harder than other people and emphasising why it is a good thing that people aren't all the same. I wonder if you have these types of conversations with her, and talk to her about all the things she is wonderful at? Empathise with her about the things she struggles with and give examples of things you struggle with so she doesn't feel like there's something wrong with her? It may help immensely with her emotional regulation to be having these kinds of conversations and for you to help her to find ways to express how she is feeling and open up about it (often very difficult for autistic people to articulate this, so she'll need extra help to learn this skill).

It sounds like you're doing everything right tbh OP (I'm an AuDHD woman and I wish I'd had a parent like you!)

Just practically speaking on the socks - can you get her seam free ones (sockshop do some)? Could she just have put the socks on for the activity rather than wearing them the whole time? Did she know beforehand that she was going to have to wear socks or did you tell her just before you were leaving?

I would also recommend Autistic Girls Network. If you suspect ADHD elliemidds on Instagram is worth a look. And on Facebook, PAST - Positive Assessments Support and Training for PDA

Thank you all for the replies. There is so much for me to take from this and read up on. I'm grateful you all took the time out on Christmas day if you celebrate it! Hope it was a good one.

Just to answer a few direct questions.

Socks aren't normally a problem. Although I agree they are awful and hate wearing them. She normally wears them fine for school. She far more particular about the t-shirts she'll have next to her skin so I always buy those in bulk. It was more about the injustice that I want wearing socks. Lesson learned there! And also I hear you all that by the time she reacted badly to the socks it was probably more about everything else that had gone on that day.

Kids clubs, I wouldn't never force her to go anywhere. She has loved them on previous holidays as she loves craft (something I find really challenging as I hate paint on my hands, the smell of glue is gross). Sometimes I stay with her, sometimes she asks me to leave. The trigger this time is that a specific activity was timetabled. We'd gone at that time and it wasn't on..

A few of you have suggestion I look to myself for neurodiversity. That is interesting. Id never even considered it until I started reading. There is as much of me in these books as there is her.

We have had better day yesterday. We went to the beach, she loves the feeling of sand, which is something I find difficult but I can deal if she loves it, and I created her a private area to play so she didn't have to worry about other people touching her things out talking to her. She played really happily the for hours ❤️.

I'll keep reading and learning and I will get better at this for both her and my son!

Thank you all for your help.

Just wanted to say, you are not alone. You are doing better than you think. My 10 year old daughter is on the autistic pathway… camhs say there’s substantial evidence for autism and adhd. It’s such a hard age anyway, but with the added pressures of autism… I’m looking for a handbook too. I feel completely out of my depth some days. Totally exhausted.

I just wanted to highly recommend “the calm parenting podcast”. Created by a man with a neurodivergent son, and what he’s learned along the way. It was a game changer for me… I hope it can help you too. The instagram account is helpful, honest and supportive.

My girl is smart, funny and fun loving. Because of her autism, she struggles socially. Very sadly, she is being bullied physically at school (a boy pulled out her hair and hit her, other boys kick her and say horrible things). She is understandably very angry about life right now… but she doesn’t have the skills to regulate her emotions right now. And it comes out in big ways, That aren’t safe for her. We as her family take a lot of the heat too. She is currently coming home from school at 11am to be with me each day, because her mental health got so bad after the bullying started this year. ( I have 4 kids, my youngest is 6 months old, so there’s a lot to juggle… I cannot say I am doing any of it graciously right now.) We are just desperate to do something to help her.

Last week I had to take my daughter out of the theatre due to a sensory meltdown. I was really sad to see her struggle in that way. She was really excited for our family Christmas night out. This is all new to us, and her too.

The Pressure for me
to get it “right” as a parent is immense. Because there’s so much at stake if it goes “wrong”. It’s a steep learning curve, but you will find things that work for your family. For me, it was the calm parenting podcast.

Hey @AnxiousPixie ,

Thank you for posting about your family's experiences and posting these questions in this forum.

I'm exploring some of these questions with my 10 year old daughter. I've suspected that she has ASD for some time, but I had to prioritise getting assessments and interventions in place my younger child for various reasons which has taken a couple of years. Additionally I have to admit that I have been cautious about the extent to which she masks in public, and the impact this might have on the efficacy of an ASD assessment.

I took my daughter to be assessed for Dyslexia recently, and it was the conversation with her assessor after the assessment was complete, which prompted me to pick this ASD thread back up again.

I asked the assessor for advice and information on how to pursue this and she recommended the following resources:

1. Social Communication Questionnaire (SCQ).

This tool can provide structured ways to reflect on developmental concerns.

1. Information booklet: autisticgirlsnetwork.org/keeping-it-all-inside.pdf

And

1. A book: Women and Girls on the Autism Spectrum, Second Edition :Understanding Life Experiences from Early Childhood to Old Age

Once I've reviewed these resources I'll make enquiries about having my daughter privately assessed for ASD.

As briefly mentioned above, I'm anxious that much of the literature and modern understanding of ASD is centered around the experience of boys and men, I'm aware that sometimes this can mean that it can prove challenging obtaining an accurate diagnosis for ASD in women and girls. This is why I'm minded to explore a private assessment, with a clinician that is familiar with how ASD can present in girls/ women, particularly girls that are experts in masking/camouflaging in public.

Your daughter is very lucky to have you in her corner, wishing you both well as you navigate this together.

Hi OP, just wanted to send some solidarity DD is also 7 and ASD and sounds very very similar. It is so emotionally draining. The Christmas period has been especially challenging with all the excitement. You sound like a lovely mum and doing a great job.

You’ve had some lovely suggestions here of books, podcasts and things to consider.

Id suggest that it’s also worth considering really practical solutions to reduce stress. We’ve found that lower stress in general reduces the amount of meltdowns in general which in turn reduces the stress.

One example which stands out from your op is that I would ban all competitive games within the family. I’d put away any board games or things like darts etc and I’d buy some of the collaborative games instead. And I’d reframe activities like pool to “can we pot all of the balls taking turns” and things like minigolf to get rid of scoring. If your son loves competitive games take him to a board game cafe when it’s just the two of you, but don’t do them as a family at home.

I’d also sit down with her when she is calm and work out a list of a few things which reduce stress - in our house they’re have a bath / do some crafts / read a specific book / go under the covers in my bed / have a hard hug. When she is stressed try and stop the conversation and get her doing the stress reliving activities. So, for example, in the shoe example above at the first strop I’d have said “you sound a bit stressed do you want five minutes under the covers before we go out” and then brought the socks with me and tried again later.

Reducing stress in our experience doesn’t stop the meltdowns in the moment but does reduce the severity/frequency over time.