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?

My dd is not autistic but one of her close friends is. They're now young adults but met as teenagers. She is a really lovely girl and my dd adores her. She has a very solid circle of really good friends who totally accept her as she is - they tell her honestly but without judgement when her autistism is causing her to behave in a way that others might find unreasonable - or sometimes she asks them for feedback - but for the most part, they appreciate her quirkiness, her direct communication style and her somewhat childlike enthusiasm for the things and people who she likes. She is about as loyal and reliable as friends come and very, very sweet towards those that she cares about. She is thriving at uni, excelling in her academic studies and has a lovely boyfriend who dd says treats her with respect and kindness.

It hasn't been an easy road. I know that the early teens were a tough time with a serious eating disorder and other struggles. But she came through it and she genuinely seems to be very happy now.

@MrsBennetsPoorNervesAreBackAs the mother of an autistic daughter, I find this quite uncomfortable to read. It’s written entirely from a neurotypical perspective, where an autistic person is praised for being accepted despite her autism rather than simply being accepted as herself. Describing her enthusiasm as “childlike” is infantilising, and saying her friends tell her when her autism is making her “behave unreasonably” suggests autistic traits are something to be corrected for other people’s comfort. I’m genuinely pleased she’s happy and has wonderful friends, but I’d encourage you to reflect on the language you’re using.

Yes, it reads a bit like, "She masks well and, when she doesn't, her friends pull her back into line."

The price of masking for an autistic person can be burnout and can be quite catastrophic. That's not an exaggeration but I won't elaborate.

Agree @TeaAndMadeiraCakecatastrophic and debilitating.

I'm very sorry for any offence caused as it was certainly not intended. I'm not actually neurotypical myself, but I am not autistic and I do accept that my post was written from the perspective of someone who is not autistic.

In my defence, I did not actually say that her autism makes her "behave unreasonably". I said that sometimes her behaviour might be perceived by others as unreasonable, which is not the same thing at all.

As someone who has adhd myself, I accept that I am typically judged by neurotypical standards. That isn't ideal for me but it is the reality of living in a predominantly neurotypical world. And sometimes it is useful to have friends who will give me honest feedback.

My post was not about dd's friend masking with her close friends at all. I have spent my life masking and I know how exhausting that is. I think said friend is generally able to be completely herself with dd and her other close friends. However, she sometimes struggles with interactions with others who she knows less well, and she relies on her friends to help her with these interactions, help her understand if she has interpreted things as they were meant, help her to ensure that her own communications are coming across as she intends etc.

And yes, occasionally her friends do need to call her behaviour out if it is negatively affecting the rest of the group, just as they would call out the behaviour of any other member of the group in a comparable situation. The only difference is that, where they recognise that the behaviour might be related to her autism, they try to be a bit more sensitive about how they approach things. One example was when they all went on holiday together for the first time, and their friend's need to control every last detail was starting to spoil everyone else's enjoyment of the holiday. They had a kind but honest conversation with her and mutually agreed a way forward. This enabled all of them to enjoy further holidays together without issue. I am certainly not suggesting that autistic traits need to be "corrected" for the comfort of people who are not autistic at all. But autistic people, like everyone else, may sometimes need to moderate their behaviour for the benefit of those around them... that's just part of living in society.

Regarding the comment about childlike enthusiasm - I accept that this was maybe the wrong word to use and I apologise if it caused offence. I had no intention of infantilising this young woman. I was trying to capture an aspect of her personality which I personally find very endearing but perhaps it was misjudged.

While I understand this, it could just be a case of her thinking being very black and white and them trying to help her see the grey. No one wants to be constantly told that they should be vegan because eating meat is murder and to think of the animals being killed for example - even if it is true. I see absolutely no issue with her being corrected on something like that and I say that as someone with a 20 year old DS with ASD. The idea that people are allowed to be completely unreasonable because they have a disability is ridiculous, people with ASD are often perfectly able to learn social conventions - but they often do need them made explicit to them.

Childlike enthusiasm is a compliment that can only be applied to adults otherwise it wouldn't be childlike. Are you one of those people who thinks women over 18 should never be referred to as 'the girls'?

Honestly picking apart such a positive post does no one autistic any favours IMO.

I did say in my post that it's worth giving someone the chance though. You don't need to be able to do higher level stuff if you're not gifted in that area, there are other types of work to go into with even moderate levels of ability and intelligence. You can't always do what you might like to do because, ultimately, it won't be sustainable. Humans are built to learn skills and it's worth introducing them early to learn skills they might take further in the future. Even something like learning a musical instrument can help to build patience and perseverance, along with the technical skill of actually playing it. I'm just saying that soft skill jobs can be very tough and everything should be done to avoid them unless the individual is absolutely positive they can manage. Teaching them how to be adaptive to changing situations is important too should a change of job or career be required.

Sorry OP my pp was off track.

I don't have an autistic DD but I have an autistic DS (20). I would say that support and enabling throughout childhood is really helpful - don't be afraid to be that helicopter parent. At the same time be aware of trying to build independence and do that in as small a steps are they require. Don't think that because they try something once and it's a disaster that it will always be that way, they just might need more preparation or just a bit more time.

At five I would say really focus on helping her learn to read - books can be such a solace, teach autistic kids so many social rules and really help at school as well. Encourage her to have friends round to play, have some activities for them to do together as free play is sometimes difficult or they run out of steam with it - DS found it so much easier to build friendships on a one to one basis doing some structured activities together than in a classroom or playground full of kids.

Around yr 5/6 is when things started getting trickier friendship wise for DS, the gap in maturity suddenly widened and he was left behind. He was quite isolated at secondary school and I think thought he would permanently be quite a 'loner'. He is very happy alone so that wasn't a huge issue for him (although it took me quite a while to accept!) However now he is working in something he loves and is really, really happy. He now has a big group of friends that he mixes with at work and then spends his evenings happily alone decompressing in a small, quiet shared house.

IME autistic adults will be extremely unhappy doing a job that they don't like, do all you can to help them find and encourage their passions. I agree that stem can be great for kids with ASD, it's an area where their way of thinking can be really useful. DS got into programming just before COVID and we took advantage of that time to get him doing lots of courses - now he's a software engineering apprentice.

Our whole family- me, DH, SD16 and DD6 are at different stages in AuDHD diagnosis. The thing is, that on it's own tells you very little about how we cope with life.

SD and DD could not be more opposite and it manifests completely differently in both of them. SD describes herself as "emotionless" and is very, very laidback. She's extremely strong in maths/science/computing, very logical, follows all the rules and doesn't take risks. Hates reading, stories, anything she thinks is "girlie", and whimsy. She has a solid group of friends who are all very similar to her.

DD is a whirlwind, very highly strung, very creative and imaginative, considers rules to be guidelines and has no sense of danger and lives for being on stage, singing, dancing and acting. Highly gifted in language and reading. I'm starting to notice some friendship issues and her getting pushed out by other girls or called "weird". It breaks my heart. We are also seeing a lot more behaviour issues with her as she cannot cope with transitions or regulate her emotions, which seem to be huge and all-encompassing. She feels everything.

Their futures are going to look very different. I have no doubt SD will lead a successful (if slightly boring) life with a solid job (she's thinking of becoming an actuary) with lots of pets and Lego.

DD, I don't know. She will either be wildly successful in a creative field or really struggle. She has asked me recently to find her an agent after she heard that a teenager we know has been signed by one. My head says, "Never put your daughter on the stage," but my gut says that this is a child who must be allowed to follow her passion and she will never be able to go with the flow.

The National Autistic Society has a forum for parents which could be useful. The struggles my 10 year old experiences does change, or rather wax and wane, but luckily good friends and a great school has helped. It’s the masking that causes burn out for her, and severe debilitating anxiety which she is having therapy for. Doing all the research, all the reading, parenting courses, liaising very closely with teachers & SENCO helps.

Autism outreach at primary school was what helped my DD learn social 'rules'.

They came to her school twice weekly and her teacher and my DD would report any 'difficulties' she'd experienced in the last couple of days (usually disagreements with peers and problems in class with impulsiveness).

Whereas before she wouldn't be able to understand or even listen fully to a peers point of view, the Autism Outreach worker would get my DD and whatever child she'd had a disagreement with and coach them both through what to say and do when they disagree etc?

Whatever the issue was, both she and the other child involved were given the tools to be able to understand the others point of view, and how to resolve conflicts.

This meant that my DD AND her peers were taught, so the peers understood that my DD hadn't meant to be rude/mean etc, and my DD learned better ways to express her needs/feelings/opinions.

This was what actually made my DD's school life a much better experience than it would've otherwise been (at her previous primary school she had zero friends and was actively disliked by most of her peers as she upset them by being 'rude' or 'mean').

I'd also encourage you to allow her to try any and all hobbies she would like to, as having 'friends' at a hobby is MUCH easier as they have a common 'topic' to chat about, and are usually kept very busy? That means your DD will have a wider circle of friends than just her school friends? (so if she's had a crap day at school with her peers, she's still got her friends from her hobbies?)
It may also very well lead her to discover her 'thing', i.e something that she loves and focuses on.

My DD now teaches her 'thing' for a living. She has an Honors degree and is still pursuing further qualifications.

It really is entirely likely that your DD will succeed in her life and career, she just may need a little more support to help her along the way. 💐

My autistic DS is a similar age to your DD, but DH is autistic and I teach quite a few autistic students at university (in an arts subject - so I also reject the idea that autistic kids should be pushed towards STEM. Many of them are intensely creative and excellent writers, artists, philosophers, historians, etc.).

My overall impression is that later primary and secondary school can be very hard for autistic kids. However, many of them thrive at university with the right support for all sorts of reasons: being allowed to study their passion, set their own schedules (to a degree), young adults being more accepting of difference, a wider range of people to become friends with. Obviously not all autistic young adults will be able to manage university for all sorts of reasons, and many may not want to go.

Also "facing significant difficulties" and having an overall happy and fulfilling lives are not mutually exclusive. I would say that both apply to DH. So, it's probably not realistic to assume that you DD will never struggle with her mental health, but it's certainly realistic to believe that with support and self-understanding, she can create a life in which those struggles are not the defining factor in her experience.

Finally, I would encourage her to consider jobs where she has as much autonomy as possible. There are more of these than you think, especially as people become more senior in their professions. But a lot of the happiest ND people I know are self-employed.

Your daughter sounds remarkably like my son at that age. We made similar adaptations including listening to music at transition times and a weighted rucksack. It sounds like you are doing all the right things. I found that structured social groups like Scouts helped hugely as less overwhelming; plus sports like badminton/tennis and non aggressive martial arts to teach working together (again less overwhelming and more structured compared to eg hockey or football). With the right support it often gets easier as you and your child learn coping strategies. My son got a first class in maths and is about to embark on a phd so yes be optimistic! I wish someone had told me 18 years ago that these children can and do flourish. I wish you and your daughter all the best. X