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.

I’m the parent of an autistic son who is now 17. That was my life too when he was 7. Getting through every day was a nightmare and I was continually embarrassed exhausted and despairing
he is now a charming socially able young man who understands his autism and moderates his own emotional/ behavioural triggers. The most useful thing anyone ever said to me was that ASD children mature learn and grow too
everything you have said proves you ARE a good parent - you have great understanding, you try to parent in a way that is adaptable and flexible whilst gently guiding her in the need to follow some rules/ let others win
try to find some support from other parents, there are many of us, various organisations and support on Facebook etc. also consider if you might be neurodiverse yourself as sometimes that can make it harder for one parent and so important that you and your husband are a team and that sounds like something you are also doing well

You're definitely not doing a shit job. You're doing so much already, you show a lot of understanding of what your daughter is struggling with and it's brilliant you and your DH are working as a team to best support both children.

I should be heading to bed shortly, but just wanted to say I hear everything you're saying and can relate very much (I have autistic children who are in their teens now, but really remember the struggles with 'fairness' at primary age)

I have found the PDA society website helpful (one of my kids has strong PDA traits). There was a book I read years ago too which made sense, M is for Autism, which is about autism in girls.

Making time for myself is essential to keep going, same for DH so we take turns to go out/exercise/meet friends.

Yes, medication may well help you as well as the usual suggestions of mindfulness/yoga/exercise.

I hope tomorrow is a better day

Thank you @ipredictariot5 . That is so unbelievably helpful just at this moment. It sounds like you have done amazing with your boy..I hope I can help her develop the same. I'm going to try and get some sleep now. But thank you so much for taking the time to reply! Merry Christmas.

I have two autistic daughters, teen and pre-teen. They can be quite challenging and there are days where I know I don't handle it well. We're only human. I try to sit down at a calmer time to talk with them if we've had a bad moment and then reflect on how it could be done differently next time. I find the autistic girls network on FB quite helpful.

Hey OP, it sounds as if you're doing so much right, please don't give yourself a hard time. It can be so worrying and exhausting. I have found that adopting a mindset of radical acceptance of my limitations as a parent, DD's challenges and of whatever the circumstances might be really helps.
Autism is often characterised by social and communication differences and some developmental delay. I find I need to remind myself of this often as, despite being articulate and quite charismatic, DD struggles massively with processing 'incoming' language and is often overwhelmed by reciprocal communication, which leads to perpetual upsets and misunderstandings. My biggest and most frequent shortcoming is forgetting this and overestimating what / how much she'll be able to cope with. And that even if she appears to be coping, she's often 'gone over' inside and will need to unravel for a bit before she can regulate again. I know you say she's the same when you are not on holiday, but that's not to say she's not still struggling with being away. It is also harder to manage and stay a step ahead as a parent when you're away from your home, so the whole dynamic will have changed subtly.
Take care and celebrate your commitment, curiosity and effort. These mean the world to her.

Look up PDA. My DD was only diagnosed autistic at 14, but the signs were there from an early age, at least at home - everywhere else she was a champion masker.

I always just thought she was incredibly stubborn but when I read about PDA, it was like a switch went off. My home is low demand now and whilst other parents might be horrified at what she gets away with, she is (age 16) slowly maturing and being more helpful. She's intelligent and funny, but highly anxious, no social filter and struggles to process speech quickly, so conversations are hard for her.

What you said about games resonated, so take a look at At Peace Parents on Instagram.

Help in school is based on need, not diagnosis (no matter what the school might say), so do have a conversation with SENCO even if she appears to be coping now. I spent years believing I was a rubbish parent because my child was perfect in school and a horror at home. Now I know how hard it must have been for her.

My daughter is autistic. Her daughter is also autistic - she's 8.

We're reading as many books and biographies as we can to find out information about autism so we can formulate a plan for support.

We know many triggers now and can anticipate many potential meltdowns and prevent or lessen their impact.

My daughter is a single mother to three children, all with additional needs. She has a job, a house (4 bedrooms) which is immaculately kept, and a mortgage. She budgets for holidays and Christmas. The way she looks at/talks/interacts with her children makes me so proud.

Her daughter was diagnosed just recently, but I paid for a private assessment as she wouldn't have been assessed before high school entry on the NHS. There are lots of recommendations with the diagnosis. We were also told to apply for an EHCP.

I completely understand your concerns. You have time to wait the year for assessment so that something concrete can be put in place before high school. My granddaughter is not academically behind but really struggles with friendships and communication - she is selective mute and rarely speaks outside of her home. Her school concurred with our description of her difficulties and strengths which was very helpful throughout the assessment. She definitely masks at school.

Write down examples of behaviours/traits, even if you think they aren't relevant. We didn't know that biting nails can be classed as a form of stimming. We didn't know that eating in a certain routine counted for anything. Include the more well known behaviours/traits. We didn't notice that she rubs her legs hard when she's talking until this was pointed out during the assessments. We didn't realise how fleeting her eye contact was. They noticed many things during the assessments that we weren't aware of - her blank expression, doesn't smile often, monotone voice. Now they've said it we can see it all the time.

I'm reading a book called The Autistic Brain. There's many lightbulb moments in that for me. I'm about as certain as I can be that I'm autistic. It also describes many of my daughter's traits - she sees words as colours and says she can formulate sentences in coloured patterns by choosing her words more carefully. This takes extra time, so you can say something to her and be waiting a little longer for a response, as she has a colour pallet in mind for how she wants to respond. Her daughter also has a very long response time, which the assessment concluded that she needs extra time in school to complete tasks/tests.

We've still a lot to learn - but we're more excited now than concerned as we're finding a different 'spin' on the way forward.

Oh - the first things we did after her assessment (by recommendation) was to get her a spinning chair and loop ear plugs - she loves both.

Oh my word. Thank you. Reading your replies has made me feel so seen. None of my friends have neurodiverse children and so they just don't get it.

Thank you. @AutismTimesTwo I've ordered m is for autism and I'm going to read about PDA today.

Thank you all for taking time to reply. I'll keep fighting for her, of course I will. But my, is it hard.

OP, just to say the very fact you’re on here writing all this in itself means you absolutely aren’t a bad parent, you care and you’re worried. There’s some great advice here but have a fantastic Christmas and please remember to reframe your thoughts, you absolutely aren’t doing ‘shit’, trust me x

You're doing a great job OP, autistic girls' overdeveloped sense of fairness and overwhelming need for control is HARD.

May I suggest you investigate ADHD alongside ASD? Meds have been life changing for my AuDHD DS1.

I have 2 ASD kids. The tantrums are really hard. My 7yr old is just hard. She doesn't mean to be but she is. I often just have to sit and wait it out. Everyday i thibk im failing but each day i feel i do better. Try give yourself and daughter lots of grace

You could be describing my DS17 here. Middle to upper primary was the worst time for him for dysregulation and meltdowns- between 7-10 I'd say. He was understimulated and misunderstood at school and I think that contributed. There was a lot of unfairness at school that he had to suck up, so he would often be extra picky about it at home!

OP - you're doing your best. Definitely reading up on PDA may be helpful and also it could be as many as 70% of autistic folks have ADHD as well which can contribute to dysregulation. I'm AuDHD myself and still have the autistic justice button which can react if pushed hard enough! The meltdowns are HARD, and the only thing you can really do is try to foresee triggers and prevent. You can't stop one in its tracks - it just has to take its course. And if it does happen, try to take what learning you can from it and not internalise it as your fault. You can't predict everything and kids will respond differently on different days, if they're tired/overstimulated/at capacity, etc.

I was also like your DD as a child with rules I considered stupid or didn't understand why they were there (like why do I have to wear foot prisons (socks) without good reason !). Autistics often have a much higher need for information and context than non-autistics so the "why" may be more important for her if there's a rule she has to follow.

Sounds like you’re doing everything right. Believe me, none of us parents of ASD kids are perfect… it’s hard and there are times we don’t always react in the very best way!

My DS is 10 now and things have got easier over time. As your DD grows more emotionally mature the big emotional dramas etc will lessen.

My staying very calm with DS (when possible- as stated above I have my moments!) and speaking in a soft quiet voice helps him a lot. When he gets worked up and upset eg at losing a game I empathise with him eg ‘I can see you feel disappointed and I understand why, but you played your very best and I’m proud of you’. That’s guaranteed the quickest way to calm him down now.

It’s usually anxiety now that causes him to have emotional outbursts eg if he can’t find something he needs to bring just before we leave for school. Again, staying calm and encouraging him to be calm helps. But now that he’s developed more emotional maturity I notice that every single time he has one of him emotional outbursts he quietly apologises to me a few minutes later and we have a hug. A few years ago I couldn’t imagine that happening.

You are doing so well. it's so hard at that age . Honestly they change so much. My son is 22 now and is a lovely boy very different from the seven year old he once was but I've been there we used to seperate as well especially on shopping trips as I also have an older daughter not on the spectrum hang on in therex

Ahhh OP, you really are doing well already (from an autistic mother to two autistic children similar ages to yours). You offer her affection and understanding which is more than many of us received as children! That love for her will shine through and she will know she is loved.

Mayhem here but will reply properly later!

The fact that you’re on here wanting to find out more tells me what a good parent you are. My DD was diagnosed at 13 and I didn’t see the signs until secondary, although in retrospect, there were definitely clues and I have worked with a lot of autistic and ND children in my time and I still missed it.

The autism charities, including ones which support younger children like the Isabella Trust, have been very helpful, as has CAMHS. In particular, learning about sensory diets was useful.
Finding out about stuff, doing courses, speaking to other parents have all helped,
Don’t neglect your own self-care - you need a topped up tank to cope with the emotion - for me, it’s exercise and doing the social things with friends that trigger others in the family.
Like another poster, I’ve seen more strategies and ability to regulate post 16 with my DD.
Also, although none of your friends have ND -diagnosed children, I can guarantee this will be different in a few years- a lot of children are getting diagnosed in secondary school when the communication/ friendship wheels fall off.

Take care. X

Your post really, really resonates with me as the parent of a child with ADHD. I wanted to say that and that I will try to reply properly later.

Autistic girls are so different to autistic boys. I work with children with SEN and my daughter has autism, OCD, and anxiety. Despite my deeper understanding from my job, I feel like I fail her constantly. I feel thats partly because I now realise the bulk of my training is aimed at supporting boys. Have a look at the Autistic Girls Network there is loads of useful information on there.

I meant to say as the parent of an ASD child! Not ADHD! Blame the Christmas sherry.

1000% true (AuDHD and female here and worked in CAMHS).

Yes, autistic girls are failed SO badly, with many parents and teachers not even realising they are autistic until they are in secondary school and have a mental health breakdown by which time immense damage has been done.

The fact you have realised relatively early OP that your DD is autistic and likely has ADHD (I agree based on what you've described because I have both and so does my daughter and your description was so very similar to her and to me in early childhood) will make a huge difference to her because you can parent appropriately to her needs now - even if diagnosis takes more years - rather than realising much too late that you've been trying to parent her as an NT child throughout her childhood when she has the almost inevitable mental health collapse in YR8/9 that autistic girls do if their needs aren't met in childhood.

It's a tragedy that so many girls' needs are still unrecognised/ dismissed, but you're doing really well to have recognised it and be trying to adapt your parenting to meet her needs and actually help her rather than trying to make her conform to behave like a different child. Give yourself some credit. It is hard and nobody is perfect, just keep going and learning and fundamentally listening to her, not dismissing/ invalidating how she feels because it isn't how you would feel in the same situation.

Will try to come back and suggest some more resources later.

Please don’t blame yourself or call yourself a terrible mother. You and your husband are doing the very best you can in impossible circumstances, managing her dreadful behaviour while trying to keep home life reasonable for your lovely son. You didn’t ask for this. You didn’t sign up for this. Cut yourself some slack. It isn’t your fault.

@Nextyearhopes I don't think characterising the struggles of child who is showing very strong signs of having disabilities as "dreadful behaviour" and trying to contrast her distress with her "lovely brother" (thereby implying that because she has these difficulties she is not also an equally lovely child) is remotely helpful or healthy or the type of approach any loving parent would pursue.

Others have given useful practical suggestions.

i just want to say, you are clearly NOT doing a shit job. You are in a very difficult situation, and clearly occasionally overwhelmed. As someone said, do consider if perhaps you’re neurodiverse too.

But you sound like you have an excellent understanding of your daughter and her struggles already, and you care, so much.

I hope some of the resources suggested on this thread can help you , and that things will get easier in time.

Evening, as others have already said - you sound like you are doing a great job. Both my Children are Autistic - DS is 19 and DD is 16, both very different from each other. What we learnt with DD is that her sensory needs plays a big part in her emotional regulation. Can I suggest that you have a look at Sensory Processing Disorder too?

For my DD, she's regularly have melt downs because she was unable to express that she was hungry or her socks didn't feel right, her shoes weren't tight enough for her , even those the straps were marking her feet.

We found over time that she needed the sensory input of chewing to help. The textures of clothing were important, especially next to her skin. Seams from clothing were triggers, so socks, for instance, were turned inside out so that the toe seams weren't against her skin.

While this may not add any answers to where you are at with your DD at present, the sensory side of things might help with any anxiety that is displayed through her behaviour.