AIBU to feel hopeful about my autistic daughter's future?

[MyBoldFinch]

My DD (5) was recently diagnosed as autistic. She’s very bright, funny and desperately wants friends. She struggles with sensory sensitivities, gets overwhelmed by big emotions, can be quite rigid in play (finding turn-taking and compromise difficult), and generally fits what used to be described as the “active but odd” profile.

Even before the diagnosis we’d started making changes at home…being more aware of sensory needs, using visual supports and etc and we’ve already seen some really positive changes in how happy she seems.

I suppose where I’m struggling is looking ahead. Part of me thinks that if we’re proactive and learn as much as we can, getting the right support around friendships and social skills where needed, advocating for her, and helping her build confidence then she can absolutely grow up to have the happy, fulfilling life she wants.

Another part of me worries I’m being unrealistically optimistic, and that she’ll face significant difficulties regardless of what we do and I need to accept that.

So I’d really love to hear from parents of autistic girls diagnosed around this age (or autistic women themselves). How are things now? What helped most? What do you wish you’d done sooner, or not done at all? What actually made a difference, and what didn’t?

I’m not expecting a life without challenges and I know she’ll always be autistic and wouldn’t want to change her. But ideally I’d love her to accept and like herself, find her people and keep a close relationship with us throughout her life. And not have any really serious challenges like ED, big MH struggles etc. I just want to know what’s realistically possible, and where it’s worth putting our energy.

AIBU to be hopeful?

Of course you are right to be hopeful. Both for yourself with a loving lovely daughter and for your daughter herself who over time will no doubt reveal her own super powers!

I'm an autistic adult and very happy.

My teen and early adult years were tumultuous at best but I now run my own successful business, am happily married to my (autistic!) DH, own my own home and am able to work around my limitations very easily.

DD is studying Engineering at a very prestigious university approximately 1/3 of her class, including her, was at the ND day on the very first day of college.

Loads of ND kids in previous generations were extremely successful. No reason your DD cannot be one.

Yes you have every single right to be hopeful, I’m autistic and live a pretty normal life.
I really hated routine change when I was younger, my parents only figured it out in my pre-teens once they had it made things a lot easier.

No advice (sorry) but you sound like an amazing mum, and with you behind her, I'm sure she'll excel!

I wasn't diagnose until I was 30. Childhood was hard, I did have friends but didn't really understand how to behave so once we were older teens and it was about large group dynamics I was completely lost, and had boyfriends instead since 1-1 relationships were easier for me.

I got degrees, a good job and am successful at work and financially secure. I have a loving family, a few close friends and active hobbies.

I have teen DC who are Asd and I am worried for their future but everyone is different and life is changing rapidly with AI, my focus is on them being healthy and happy rather than excelling at school or getting high flying jobs.

DD diagnosed at age 13 now a young adult. Went to Uni, got a degree, has an active social life, boyfriend and works. Still struggles at times but I am so proud of how she has a positive attitude to life. She knows what the possible issues are and makes sure she takes care of her mental health and adapts where she can. She is also open about being autistic. She doesn’t let it hold her back.

It's possible, but she needs to choose the right job in the future. Try to encourage interests around science, technology, engineering and technical work. A lot of previously undiagnosed autistic women are in teaching and nursing, but I think it's too much now (I was a nurse and burned out and had to leave) and people are way too demanding these days and expect higher levels of communication and constant attention. Her natural interests might not stretch to science or tech, but give her the chance. The touchy feely jobs are a fkn nightmare now. I wish I'd done something else looking back, but wasn't diagnosed until I was 45.

Thank you for sharing. Is there anything you think your parents could have done differently to help during your teen years? Or anything they did do which was particularly helpful?

That’s so kind, thank you 😀

She sounds like a great girl!

Many many autistic women aren’t into STEM- me included.

For me it's about not projecting my idea of success or even happiness onto my DD. I mean you ought to be open minded like that with any child but I think it's especially important if they are ND.

Also, struggling isn't weakness or a failure. It's a direct result of trying to fit into a world that isn't quite built for them. Our DD had a breakdown at aged 11 / 12 and it wasn't her "letting autism hold her back", it is a nervous system disability and while support and accommodations go a long way, you do need to accept she is neurodivergent and that it isn't your - or her - fault if there are wobbles. Be kind to yourself.

School and anxiety will be the biggest thing - the internalising of anxiety is huge! It’s debilitating. Keep an open relationship at 5 the co-regulation is relatively easy because so much of their world is just you/family… but I feel shit can really start hitting the fan from Year 4 onwards.

Are you speaking for experience with asd child? Out of interest were they anxious aged 5 as well or only later?

Dd was diagnosed a few years ago.
One thing I wish for is that she had more activities and interests like her friends do. Maybe I should of worked harder to find 'her thing'.
She has a lovely group of friends thankfully, but I see them going and doing activities, trips etc and do feel a bit sad. However, my dd is currently doing 2 activities so we have had progress. (But low key, unlike a lot of her friends with their passions). She's the only one of the group who doesnt want to do French exchange, field trips, school choir, clubs etc

I was like her as a child. I did have difficulties growing up but had accommodations made for me despite having no diagnosis (ie eating lunch in a quieter classroom at primary school, and doing exams in a smaller room alone later on).
But now I'm happy and successful. I am married and we bought a house. I don't have many friends but I have a couple of real, close friends who I cherish. I have a good relationship with my parents and enjoy my job.
So things have been hard in some ways but I would never ever change it. I wouldn't want to have lived my life NT at all. I feel like the autism has given me strengths that are rarer and valuable.
All of this to say I think it's lovely you are optimistic and your little girl sounds fantastic

Agree with this.

At five all parents are hopeful for their kids, we have the additional worry that their neurotype will disadvantage them or make it harder for them. Clue: it will be harder for them compared to their peers but… that doesn’t mean she cannot and will not thrive. The challenges she faces can and will make her stronger if she’s armed with the tools to navigate them. Being able to explain scenarios as they arise to allow her to understand behaviours and reactions will really help. Never say things that could sound like she’s being blamed for misunderstandings even if that’s not your intention- giving examples of “someone I know” can often get round that explaining how that person handled the same or similar scenarios.

Who she will become won’t be apparent yet and don’t look for it, allow her to find her way in school and find her people in her time. Have her understand those people will change as she grows older so she doesn’t feel to rejected when friendships move on. Encourage out of school friendships based around hobbies or extra curricular activities (this is important to escape the inevitable bitching and drama that will develop from about age 9 onwards). This worked really well for me and also my daughter .

Career ideas may change weekly or may be fixed from now on so don’t concern yourself with anything like that, even when she’s 17 and sitting exams - she may take longer to be ready for college, work or uni but that doesn’t mean it wont be something she does in time.

The biggest thing I dont see spoken about as much is how much we’re socially and emotionally younger than our peers - well into adulthood. We can be in our 50s and wise as an owl but have the social abilities or understanding of someone in their early 20s - this is where being able to analyse and discuss situations really helps. I learned the hard way but with my daughter when something happens in a group we discuss the dynamics and assess them. Being that kind of literal between us (we call it debriefing) has really helped her develop relationships that have lasted a good few years now.

The other thing I suggest is when she doesn’t have a friend, be her friend. You’re always her mum and that comes first but be someone she’s happy to hang out with too, you might not be sitting on street corners but going to gigs/cinema/for walks etc without motherly authority will her feel a wee bit less lonely.

I have an autistic daughter, diagnosed at 4.5. She didn’t speak until she was 6, after her diagnosis we were offered genetic testing to see if a genetic cause could be found, it wasn’t but instead it was found she also has muscular dystrophy. Then she was diagnosed with hypermobility and then with learning disabilities too. She’s almost a teen now, she’s in a specialist unit at a fantastic school, she talks all the time now, mostly about her intense interests but we have some lovely conversations. I still bath her and wash her hair, wipe her bottom, she just would never even think to get a wash of her own accord, doesn’t even enter her head. She is having to use her wheelchair more often as she’s getting older.

I’d say she is around 7/8 years old in her development. She’s such a happy girl. I really hope for her to have some independence as she grows but I have no idea when/if that will be the case. She cannot go out alone as other children her age do, so seeing the other children from her old primary school playing out with friends and going into town shopping or out for food independently makes me sad. She is SO vulnerable. She has some friends within her unit at school but none in the mainstream part. She doesn’t see anyone outside of school though, everyone has always outgrown her eventually. She struggles now the other girls are talking about boys, make up, being on phones, social media etc she just doesn’t understand it all and is still very much all unicorns and rainbows.
She is a talented artist and loves to draw characters that she creates. I have no idea if she will work when she’s older, I have no idea if she’ll ever live independently, it’s all a wait and see game for us. I always have hope though, I never thought she’d speak, I never thought she’d read (she does and she’s an amazing reader and loves it) I never thought she’d be out of nappies (I cried when she used the toilet for the first time, proper big ugly crying!) I’d love her to be fully toilet independent at some point. It’s been a journey and I could fill a whole thread talking about her.

Throughout this journey, I 100% believe I am also autistic. Being in her appointments and speaking to her doctors I can just relate to so much of what they say. It explains so much of my life. I am clearly somewhere else on the spectrum compared to my girl but Autism would explain my lack of friendships, the bullying I suffered, periods of awful mental health struggles, my distress at change and on and on. BUT I do have a first class honours degree (although I almost quit near the end and had a breakdown but I did it) I have a wonderful husband and three beautiful children (2 are autistic) I don’t currently work as I care for them. Their appointments alone are like a full time job never mind everything else that needs doing.

My other autistic child is incredibly bright and academically gifted yet struggles hugely socially, been bullied horrendously and has serious mental health problems. I have spent many parts of my life completely broken. I would love a break sometimes.

My biggest piece of advice is always be their biggest advocate, fight their corner and get the help they need/deserve but also try look after yourself too. Try build a support network around you, we don’t have that and it’s so tough. And if you ever experience bullying that the school will not help with just move schools, it won’t stop and it won’t change. I should have removed my child and it will always be my biggest regret. Also push for help if metal health issues ever arise, I’ve been close to losing my eldest several times and medication has saved him.

So sorry that turned into such an essay.

I'm going to be realistic, as the parent of three autistic children. I think it's right to be hopeful but the reality is, and this is my key message: You'll have to wait and see. Especially with girls, there is a shift in the way social relationships work around the preteen years. That's when it got difficult for my DDs and things started to change and become more difficult. At five, I couldn't have predicted any of how it has worked out. I didn't see any hints of that until the mid-teen years.

At this point you can't know what is going to happen. I have one in almost full time employment, another who will probably never be independent. I also have one who is married and working part-time. They've all been given the same opportunities and support, and the outcomes are just what they are.

My DH is autistic and very successful. Given the family, I expect I'm probably also autistic, but it doesn't really affect me in the wider world. There's really so much variation. Just do your best to give them supports, experiences and, most importantly, accept them for who they are. I think you'll have some stressful times ahead but you just work with what you need to at the time.

ETA: With my DD who will probably never be independent, the thing that scares me the most is her vulnerability. She's very intelligent but a bit naive. From her teen years I've been doing my best to educate her about personal safety, especially when it comes to men who may not have good intentions.

@MyBoldFinchyes 100% speaking from experience my autistic daughter is now 11.5, a huge thing is to support them with their identity - to feel no shame. But the anxiety is just so big.

my DD works so so hard to fit in in some ways - so at home we create her world for her in as much as we can. We are very low demand, we nurture her interests. I should say she is very bright, incredibly academically able - but it won’t matter one bit if she can’t attend school. She’s in school at the moment we’ve had EBSA - we will have more. I will continue to fight for an EHCP and we shall see what’s available for her - it might be we home school.

what I’m trying to say at 5 I knew none of this, I parented differently - bloody hell we both had full time jobs! Now I work for myself, it’s the co-regulation piece it’s huge. You need to build trust, masses of trust - so she can trust you to support her. Have honest open conversations - read books about autism in girls.

no one knows what tomorrow brings but in reality aged 5 her world/ your world are still almost one.. it’s when the outside world hits it is just- I can’t describe it. Look after yourself too in all this.

Agree with @TeaAndMadeiraCaketoo

to say my 11 year is is an accomplished musician on multiple instrument - but I still bathe her and wipe her bum.

Yes, I do think that is a huge turning point with autistic daughters. When the outside world hits. That's really hard for them and when the real struggle begins, in my experience. Before that, you can make sure they are supported and their family is likely to be very safe and understanding. The world is really hard by comparison.