Autistic daughter

[Kittycat1981]

We think our DD16 could be autistic and have started the process of seeking a formal diagnosis. It is a lot to take in at the mo as she was a really happy, confident child until her teen years. Covid lockdown and rampaging hormones took their toll and she was diagnosed with social anxiety aged 13. She had help from a private psychologist who did help but she still found school challenging (not the academics- she’s bright, conscientious and had a group of lovely people to hang out with). Although she is much improved in terms of social anxiety she still finds life difficult and we can see how hard when we compare her to her younger sister.
just wondering how people with autistic girls help them to navigate their anxieties and help them cope with things like going on holiday to new places which she is eager to do but struggling with the idea of being away from home. It just seems so strange to think the same child loved holidays and eagerly went to brownie camp, school residentials and sleepovers. At the moment I am really fearful for her future as I can’t see her managing university although she really wants to go. I know lots can change in 2 years but it seems impossible for her to operate with out us as her support system.

We were told my DD had phobias, anxiety and OCD at primary school but generally she was happy and coped with noise, crowds, travel and holidays, talking to others, had some friends etc. Secondary school was traumatic and they referred her very quickly for autism, got the diagnosis at 14. Unfortunately she has been very ill with her anxiety and OCD for a couple of years now (she’s 15 and a half). But she hates loud noises now, won’t speak loud enough for people to hear her, hasn’t made a friend at secondary school and gets upset at travelling. She presents much more typically autistic than when she was young. She has some physical tics now as well. I feel at a loss because we have tried therapy with several different people, she is on anti depressants and she struggles so much. She is still in school but calls me crying fairly often. Her OCD can make her take hours to get dressed. She is constantly blowing everything in case it has imaginary dust on it. I could go on and on. I just want her to be a well and happy autistic girl as opposed to one who can’t enjoy her life but don’t know how to get her there. We do still go out and do things and go on holiday and actually once we have got through the getting there bit, she does enjoy some things like sand on the beach or more childlike activities. But in every day life, she just seems unable to cope. I wish for her to be able to go to university or at least to be able to work one day, but it’s hard to see how it could happen now. I sympathise, it’s the hardest thing to deal with as I just feel powerless and like you I am letting her down.

My daughter was diagnosed last year at age 13. Looking back all the signs were there, but the wheels really came off once starting secondary school. Severe anxiety and not able to go to school for months.
I read loads about autism in girls and basically through out all the rule books for parenting NT children. Total low demand parenting now, no pressures and she is slowly coming out of it.
It's really tough and awful to see them struggling so much and how much masking she had done throughout her time in mainstream education.
So much more needs to be done to raise awareness and knowledge of autism in girls.

No, Covid/lockdowns didn’t make anyone autistic. However, the general impact of that on their mental health, may have made it harder to cope in general and mask (as many autistic girls manage for a long time). So, likely Covid would have made their autistic traits less easy to manage.

I was diagnosed age 50 .
I'd spent my life trying to find ways to cope
Mainly bulimia from 14 to 46 .
Would of been good to of understood myself earlier
Would of saved me recking my teeth and insides .

Part of the issue with girls going undiagnosed is that what we perceive autism traits or signs to be are not so common in girls, as boys. So, as a society we aren’t flagging up earlier signs for many girls in particular, as they don’t necessarily tick the boxes of Health visitors, schools, GPs etc…

I think what @circular2478 is trying to say is it's unlikely that a teen just starts displaying symptoms at that age when they did not before and it's just a comment that is there to act as a reminder that untill someone is diagnosed we shouldn't jump the gun. Op clearly stated dd had absolutely no issues in having sleep overs and so on and there seems to be a much more sudden change that could be linked to mh and not autism. It's as if you have decided its autism when you don't even know. Don't put ppl on the wrong path with insisting that's all, all options need to be addressed.

@ForDaringNavyOP I completely agree my daughter loved the lockdowns, was at home didn't have to go anywhere and no pressures on her or social situations.

I had my diagnosis done on the NHS
A lot of the information needed was about my development as a child and baby
Without that information I don't think they could of diagnosed me .
They wanted a lot more information about my early years ,much more so than about my life now.
The assessment is very thorough on the NHS .. definitely worth the wait

Op don't label your daughter. She hasn't been diagnosed. Keep an open mind.. don't force your child down an autism route simply because you want an answer . Just let the professionals advise and ask all the questions. Yes we know about masking but if that's the case how do we tell apart masking from genuine enjoyment or readiness to do something . I would start by asking and talking to your daughter (where possible of course without forcing her) but for example actually asking her what those experiences were like . Give her a safe space to talk and go from there. Wishing her all the best what ever the diagnosis and she will absolutely get to where she needs to be.

But they didn’t have traits, that’s my point

I am SO glad to have found this thread today. My DD is 13 and has been struggling with her behaviour (but is still achieving well academically at school with no poor behaviour there). Everyone we speak to suggests ASD but I cannot see it and am concerned that the speed at which everyone leaps to autism as the root of her behaviour may be distracting us from the real cause. I say this because of the theme in this thread - if she is autistic then that will always have been the case and it was never suggested to us by any professional before 6 months ago. For those who have had teens formally diagnosed and were surprised but ‘looking back’ can see that the signs were there in early childhood, what were those signs? What does the assessment process pull out that hasn’t been spotted before? Thanks.

Maybe the op didn't know about autism in girls at that time to spot her traits. They can be so hard to see as the girls are so good at covering it up

You only become educated in autism When you live it and I learn new stuff all the time. I've been listening to books and podcasts for years now. So much to learn.

I dont believe Many working in the profession know it that accurately unless they have lived it as a parent or are autistic themselves or perhaps a sibling or parent. Medical books are so tick list.

Listening to lived experience in other women is the way to understanding.

Sign for my dad

Baby
Bad sleeper
Never napped for
More than 40 mins
Clingy
Very early talker
Very cautious child

Toddler
VERY trantrumy to the
Point I took her to a GP. He dismissed me
Still cautious
Could put on an act for hours
Didn't really play with toys unless led by another child
Liked collecting
Knew EVERYTHING about dinosaurs not just T rex etc

Primary
Needed a safe person friend
Nervous about trips and plays but she would do it.
Her reports were always very bright. Needs to contribute more. Never puts hand up. Very quiet.

Secondary

Everything showed up in its full autistic glory

Emetophobia
Social
Anxiety
Reports said never speak in class etc
Needed a friend or wouldn't go to school.
School refusal
Started to be unable to study
Wouldn't go on holiday

Forced herself
Through GCSEs

Extreme Burn out by year 12

Dd not dad

Autism is lifelong so part of the diagnosis criteria requires there to have been signs in early childhood.
Research what those signs can be, as for girls especially it can be different to the stereotypical associations, but it's required for an accurate diagnosis as autism can't develop later in life.
If she truly didn't have any signs I'd look more into social anxiety which is common in teenagers even without the start to teen years she had, nevermind with covid lockdowns at that crucial stage.

@HeBeaverandSheBeaver Thank you.

Writing the list like this make Im you think its obvious

But at the time with your knowledge of Autism being mostly boys and the film rainman. That honestly all we knew in the early 2000s.

@SummerSnowstorm Yes, thanks and that’s my point really. I have researched them and none fit. My DD was, for example and simplistically, a good sleeper, a relaxed baby/toddler, the odd tantrum here and there but nothing unusual compared with her peers, had a wide social circle, enjoyed time away from home and was well thought of/well liked in primary where she thrived. It doesn’t fit with ASD and I have thought very long and hard about it. Perhaps though the professionals probe deeper than I have looked and there is something there? Who knows. We are going to wait until she is 14 and go down the Right To Choose route if necessary as this will likely result in a quicker assessment than a referral to the NHS team now.

I think back to my own early teens and know that I developed crippling shyness (would probably be called SAD now) from about 13-16 but I ‘grew out’ of it. I think this probably merits an exploration too.

Your story sounds very much like mine!
dd was an awful sleeper for the first 6 months but was fine after that. Was quiet at school but no more so than other children. Even now she will contribute to lessons at school. She has an amazing imagination and played for hours with her toys. She had friends and as I say loved sleepovers etc. I remember watching her on stage singing/dancing was in awe of her confidence. She took part in talent competitions on holiday and at school without a second thought.
a switch went off when she got to 11 and then became unmanageable by Covid lockdown which while she loved not going to school she hated not being able to go out and do things.
I was painfully shy as a teen and very self conscious so maybe it is that.
i think I need to get back in touch with the psych. We used in the past!
thanks everyone for your comments x

Your daughter sounds exactly like me through my childhood and what I was like when I was her current age.

I got to the high school and started taking panic attacks in classes through nerves and stress. I've always been stress since then.

I've never been diagnosed with anything and I don't think I fit the profile. I think it's been hormones and (sadly) stress to Do Well At School As Your Future Depends On It, that did it.

Now I am menopausal I can see just how much of an impact a change in hormones can make. It's life changing. Literally. Must have been fir me then too though I don't remember it.

So I wonder if there is more research needing done on the balance of hormones within our bodies as an imbalance can cause all sorts of horrible feelings. I think they do more on this in America but not in the U.K. (certainly not on the nhs.)

I don't think it matters whether I am or am not something, I just need to continue to find new coping strategies that suit me. I think we all do.

We may not all be robust but we need to find ways that are acceptable to us to get round problems to enable us to live life's as full as we choose and not be constrained if a tweak to something can help open doors for us.

If I hadn't been forced back to school I would not have gone. I'd not have gotten to college. I'd have missed out. Sometimes you need made to do something you are scared of. But in a kind loving way gradually increasing til you're doing the scary thing and are ok.

DD was diagnosed with anxiety and depression in Y13. Some amazing support at uni finally suggested first an ADHD diagnosis and then also an autism diagnosis. She is transformed and so, so happy now to understand her challenges. She is gradually unmasking and finding herself.

I hope your DD finds the right people to support her, and who understands that presenting with anxiety is often the symptom not the cause.

Early signs in my DD (diagnosed age 17 after anxiety depression and ED as a teenager)

In primary
Very bright but in a quirky kind of way
Obsessed with dinosaurs from an early age
Total focus on what she wanted to achieve (she saved up to buy a boat)
Didn't get why her peers would be interested in eg X factor but didn't see the point in finding out about it
Was intelligent but always socially behind. Didn't get social norms eg lying on floor spinning at parties.
Struggled with group work at school.
Had meltdowns in junior school.
Was just different from other girls her age.

But she was an early talker, very imaginative, could chat away to adults but on her topic

She was just my quirky DD at the time but looking back lots of signs.

I can relate to so many talking about their DD's. Mine also walking at 9 months, early talker, could recite books back to you as a toddler and an obsession with dinosaurs that still exists now (she's 19). Very quirky when young, seemed to fit the old saying about angel child out of the home and devil child at home - this now makes sense assuming she was masking. At the time we knew nothing about neurodiversity in girls so it didn't even register as a possibility.

Self-harming in years 8 and 9, GP referred to psychiatrist who diagnosed social anxiety and low self-esteem. Lockdown happened and she was so happy not to be in school everyday. She managed 6th form in a much smaller college and her first year at a local Uni but is struggling, especially socially.

She's had a phone appointment with the GP (that was hard) and is being referred for an assessment for ASD. GP didn't explain to her the process or how ling it would take. Wish we'd pursued it when she was under 18.

Wow. So many into dinosaurs. That's so odd that girls love the dinos

Now she loves space and physics. Beyond me.

But she is also great at art thank god as I can relate to that.