I feel like I've failed my dd, she's 12 and just been told she is probably autistic

[IsMyDaughterAutistic]

I can't believe it.

Dd is 12, and now that I've been told this it's actually pretty obvious, but I just didn't see it before. She was getting seen for her tourettes and they have said they are going to start the process of getting her a diagnosis for autism.

All the little things were just my quirky little dd and how she does things, but she's been presenting with autistic traits her whole life.

She didn't properly speak until she was about 3-4 but I thought it was just because her older sibling did everything for her and spoke loads so she didn't get a word in.

She has a very limited diet and would rather go hungry than eat some things but I just thought she was a bit of a fussy eater.

She has had a few different interests throughout her life, she becomes completely engrossed and it becomes her whole personality for a while, I just thought it was sweet how she got so invested in things.

She developed tourettes a few years back which has been diagnosed (apparently this can go hand in hand with autism?)

She hates hugs and people in her space, I just respected that, not everyone is a hugger, again just dd being dd.

There have been other things too, which, now I'm writing it down I'm wondering why I didn't see it. My poor dd could have been getting help and me being blind to it has made her life worse. She didn't cope in secondary school and is now home schooled, so I've failed her there too.

I don't even know why I'm writing this, I'm just so sad that I've failed my beautiful, kind, funny, clever girl by being so blind to something fairly obvious.

(Sorry if I've worded anything wrong, or accidently said something offensive, I'm just upset with myself and in shock a bit)

Please don’t beat yourself up OP. What comes across loud and clear from your post is that you ACCEPT your daughter. You haven’t tried to mould or change her. You have accepted her as she is. I have worked with autistic adults & many don’t get a diagnosis until they are at university or beyond. You haven’t failed her & it sounds as though you have been very responsive to her e.g. homeschooling. It was actually lovely to read your post and see how much you love your daughter in her uniqueness.

Don’t. Female autism is notoriously difficult to diagnose. I got a diagnosis last year at 42. Her life will be much better for you having it identified now. Focus on the positive that you can now support her in the best possible way. I recommend Yellow Ladybugs on FB.

You haven't failed, I'm also going through the process with my own 13 year old DD and I worked with children with additional needs for 10 years.

Lots of things I brushed off as her little quirks, personal preference and being an only child. It took for her to reach Secondary school where she really started to struggle socially and with sensory input (and reaching the age of the children I had previously worked with) for me to really connect the dots and decide it was something worth pursuing. This is not unusual with girls, to have to wait until High School to get a diagnosis because they mask so well. It's only since talking about it with her that it turns out there were many more things she was struggling with silently as she thought they were normal and everyone thought the way she does.

If you haven't already watch the Chris Packham show on iplayer it's fantastic and DD related to Flo.

You haven't failed as a mother but what you do now and how you react will make all the difference. Talk to her and try and find out the things she finds most challenging and see what you can do to address them. DD finds supermarkets etc overwhelming so will now stay in the car, she wears noise cancelling headphones. Ive adapted how I communicate with her, I don't bombard her with questions when she gets in from friends or school I'll give her a thumbs up to gauge her mood, make her a drink and a snack and leave her to it, after about 30 min - hour she'll come and talk to me. I let her know our plans for the day. She has the potential to become quite reclusive and would happily go back to lock down conditions so I make sure we factor in a beach or woodland walk a couple of times a week.

I look out for signs of potential overload when out, we were at my parents and I asked her to join us in the kitchen as she'd not seen them in a while and I really paid attention to the background noise and the stuff I normally tune out, the clock, the tap on, the boiler turned on, kettle boiling, washing machine and dish washer, oven whirring not to mention us all talking and realized why she'd wanted to sit in the lounge in the first place and told her to go back in there if she wanted.

Everything @Madeintowerhamlets said
Well done OP, you sound like an amazing mum

I was diagnosed at 35 my mum still doesn't believe I'm autistic.

Well if it makes you feel any better I had no idea my older DD had autism until she was 19. I knew she had severe dyslexia and had paid for private diagnosis age 10, then got her adult post-16 reassessment done for sixth form. She then went on to Uni and while applying for DSA, the Uni ran its own diagnostic tests & assessment and lo and behold, she also has ASD. Her passion for vintage fashion, I thought was DD having a hobby. Her meltdowns were just DD being emotionally sensitive. But she was a social butterfly- masked very well Etc. 😕

I had suspected her younger sister of ASD from around age 12 and fought to get her assessed, which I gave up on the schools for and had done privately at age 18 (would have been at 16 if not for pandemic). At that assessment, the psychologist basically said my DDs had gone so long because I have ASD too! and they were essentially raised in an “ND household” as apparently a lot of how we live is not NT at all.

So lots of things I thought were NT because my DDs were similar to me and because our home environment was built around being ND were actually classic ASD in females. 🤣 Sounds like you’ve had a supportive home environment as well.

(I only suspected my younger DD of having it because she is way way on the ASD spectrum so much she can’t be arsed to mask and never has.)

But their lives are far from ruined! One is getting a first at St As (the 19yo who is now 21), and the other is mulling over her offers for Unis all in the top 10 in the U.K.

The key to success is a supportive environment and you can have that with or without a diagnosis. The schools should now be putting place whatever special accommodations your DD needs. She has plenty of time before GCSEs to get to her potential. And I think you have the home environment spot on from what you wrote about letting her be her with no judgement or shaming.

I honestly think it will all work out in the end for your DD, she’s lucky to have you as her mum. And if you, like me, missed it because you have ASD too and did not know it…well has it ruined your life?

Also you write that your DD could have been getting help earlier, not necessarily so as the research into how girls present with autism and how different that is to boys is relatively new and has been slow to filter through, many HCP still believe that someone who can force themselves to make eye contact can not possibly be autistic. You also would have had NHS wait times to contend with, 4 years where I live which is why we have saved and gone the private route where it will have taken 12 weeks from my initial contact to her receiving her diagnosis.

Be proud of yourself and your DD and keep looking forward.

Please stop beating yourself up! I was diagnosed at the grand age of 40 and my poor mother is devastated that she didn't 'realise'. But I will tell you what I told her because you sound similar to her: whatever I was going through in life, she was always my biggest cheerleader, always loved me for who I was and always supported and guided me no matter what.

You and your daughter are both the same people today as you were before autism was suggested.

Autism is notoriously tricky to identify in girls so please give yourself a break!

OP, your daughter is lucky to have you ❤️

Thank you all for the reassurance and advice.

I can't believe it didn't occur to me at all, my nephew is autistic and I saw it in him very early on, my own dd and I just merrily think "Oh that's just dd being dd".

I've spent 12 years throwing myself into her every obsession, watching her in social situations and swooping in when she is showing signs of distress, trying, and failing, to have various allowances made for her at school so deciding to home school, I bought her noise canceling headphones as she hates loud noises, and it can set off her tics. I just cannot believe I didn't see it.

On the rare occasions she does go out and about my older dd is usually with her and also can see when socialising is getting too much and has the same strategies as I do to get her out of situations. If older dd isn't there then she messages me an emoji when she's feeling uncomfortable and I call and tell her she has to come home.

I will watch that documentary and I'm going to spend the next few days learning what I can as I don't know too much about autism in general, and nothing about autism in girls.

I just feel so stupid to have missed something so obvious in my darling girl, if I spotted it I could have helped her so much sooner.

I'm autisitic adhd. I raised my autistic adhd daughter without realising either of us was neurodivergent. Even when I knew about me, I didn't see it in her. And she's autistic/adhd as fuck! Dgd also. Don't blame yourself. Being a caring mum is the best help.

You've not failed her in the slightest, you sound like a lovely mum. It can be very hard to distinguish between what may be ND traits and what is just our children's quirks. If it wasn't something that you were looking out for (and why would you be?) then it would be very easy to just take her and her quirks just as they are.

Can I ask those of you who were diagnosed as adults why you decided to go for a diagnosis? Has it helped in your adult lives? (If it's not too personal)

The doctor I saw today did say that some people don't want to get diagnosed or have their dc diagnosed when they hit my dds age as they don't feel it would benefit their lives at all and the diagnosis follows then forever.

I am still in a bit of shock, but I can't see a negative side to a diagnosis at this point, am I being naive?

I too have a DD diagnosed at 14 with ASD. I know once you've met one person with autism, you've met one person with autism - but her two brothers had already been diagnosed at this point so it shouldn't have been a surprise. She'd been briefly seen/observed in primary by CAMHS but no one else thought there was an issue. And I wasn't sure but when all the professionals tell you there's nothing wrong ....

Just to echo what PPs have already said, it sounds like your DD is in great hands!

I’ve found the Autistic Girls Network a great source of information, especially this white paper they published last year.

I was only diagnosed a few months ago so a bit too soon to tell yet but I do often feel a surge of relief now that I have 'answers' to an extent for parts of how I am. I have been trying to learn to drive on and off for 10 years. But since I was diagnosed and have a greater understanding of how my brain works, I have an autism aware instructor and the difference is amazing. I will be driving soon! This was unimaginable 6 months ago!

I had an assessment at the suggestion of a perinatal psychiatrist. I was shocked by how little I knew about autism especially in women and girls before I looked into at her suggestion. Mind = blown!

Don't beat yourself up about this. The most important thing is that you love her and you are looking out for her best interests, and that hasn't changed. The chances are that things wouldn't have been much different if you had "realised" sooner. My DS was quirky in all sorts of ways similar to how you describe but I suspected ASD from early on as there is known neurodiversity in the family - but until he was 10 every time I asked his school if they had any suspicions about neurodiversity they said they had no concerns - because he is academically able and was managing to meet expectations, but they weren't seeing the stress that school was creating for him, as that was saved for acting out at home. Even once they realised he wasn't coping as well as they thought, and finally agreed to put him forward for assessment, it took 2 years to reach the top of the queue for diagnosis so that didn't happen till he was 12, and even then a diagnosis doesn't actually create any additional help or support, that's a whole separate process.

So in short I don't think you have let your DD down - you've been supporting her and helping her in whatever ways you can and you are quite right to be accepting that all her unique traits are a lovely part of her personality and aren't a signifier that anything is "wrong" with her - I am sure she is a brilliant individual in loads of ways.

You haven't let her down because your goal isn't to achieve a cookie-cutter young person that fits into a neurotypical mould, follows a bog-standard educational route and achieves specific academic goals on a set timescale. Your goal is to help your daughter to get through to adulthood healthy, happy and at peace with herself. There's a myriad of pathways through education and adolescence and the fact that your daughter isn't on a well trodden "typical" path doesn't mean that anyone has failed, there are plenty of opportunities and options. With your support, she will find the pathway through that works for her sooner or later. The diagnosis is a helpful tool for knowing what kinds of additional support she might need and what pathways might be less likely to be suitable for her, but it's not a magic solution and doesn't open up many doorways that would otherwise be closed - but will definitely help ensure that when she needs them, allowances will be made to adapt situations to her needs.

A diagnosis is a massive shock to the system even if you expected it.

One thing that really helped me was DS's friend who frames it that she was "lucky to be diagnosed really young, at 9".

Just wanted to echo that you sound like you’re doing a great job and your DD is lucky to have you!!

You haven’t failed her - in fact I would say you are exactly the mother she needs! Read back through your first post - every single point you make illustrating proof of your daughter’s autism you speak of with such love, pride and affection, rather than a sign as something being wrong. I think you’re lovely!! The fact is, her personality won’t change - those facets of her nature will continue to be pretty much the same. It is her normal. How wonderful that you see it as not just her normal but ‘normal’ normal.

It is great she is now on the pathway - you will all need that validation and assistance in the coming years. But I think, thanks to you, she will feel supported rather than different. My ds is autistic so I’m not just talking out of my arse btw xx

You haven’t failed.

I worked as a SEN tutor, mainly with autistic students. I had also received a late diagnosis of ADHD and autism.

When first asked, by a paediatrician, if I thought my daughter might be autistic (8 years old at this point), I replied with a confident “no”.

She was diagnosed at 9. The more I see it now, the more obvious it is. How I missed it I am not sure. Although others didn’t see it either - she masks well - I felt I should have done but somehow didn’t.

Your DD is still young, early diagnosis is a really good thing now.

I didnt even know autism was a thing outside children with severe and obvious needs until DS was in his mid 20s. I’ve been listening a lot recently to parents and children, and many have been surprised at their diagnosis, especially girls.

It sounds as though you’ve been doing a great job for her anyway just through switched-on empathetic parenting, not least accepting her as she is.

Girls are often diagnosed later than boys because they are much better at masking. You haven't failed at all.

She is still your DD being DD. That doesn't change irrespective of what labels are put on her.
You've given her love and acceptance and she will be all the more confident and well balanced because of it.

She's fine, it's the rest of the world that can be a bit of a problem. 🙂

I have no experience with this but I just want to say you haven’t failed, at all. If you didn’t give a shit you would be failing but you very clearly do care and want to do the best for her, that’s being a bloody good parent!

When I had similar news when my dd was 14 I had panic attacks for about three weeks, could barely go to the supermarket without virtually collapsing, burst into tears all the time, etc. My DH and I had spent literally years taking her to therapists, occupational therapy, trying to get the school to understand that she was very sensitive, dealing with sleep issues, etc etc and it still came totally out of left field for me.

So you are not alone. Best wishes.