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.

This sounds like
My daughter. I'll reply properly in a bit

This sounds like my DD. She was diagnosed age 17 but went through years of anxiety depression eating disorder and more until a private psychologist within a few sessions suggested she might be autistic. It was the making of her and ages says saved her life. She had few friends at school and although embraced challenges she struggled with holidays, new people crowds etc. She went off to uni but had amazing support, met her crowd, got a first and is now 8 hrs away from us, running a sailing provision in a school. The diagnosis allowed her to accept who she was and work out how she fitted into a neurotypical world.

thanks for your reply- gives me such hope to hear a positive story.
just wondering how you deal with their anxiety when meeting new people or going somewhere new.
her dad and I have very different opinions- he thinks I pander too much and need to ‘toughen’ her up.

My dd is very bright. Good GCSEs but had severe school anxieties and some social anxiety and phobia of vomiting.

Decent stable group of friends since year ten.

Dropped out of sixth form
In first term Bad stomach pains. All Anxiety related.

She was then diagnosed with adhd. We tried meds. They were a disaster

She spent approx 6 months in bed or gaming/on phone. and then she wanted to look at autism.

That diagnosis was a confirmed yes. Since then she has been getting better each Month Now she works part time. Sees Her Friends
Volunteers with animal care and is going to do an art course this year. She is trying new things all the time.

What helped. A good understanding private psychologist for monthly therapy and a private psychiatrist who was willing to prescribe ssris to an under 18 year old. She is now over 18 and under the GP. However we can go back to the psychiatrist should we need too. Oh and sorting her hormones out with the pill. That was also trail and error to find the right one.

Had to go private. The nhs was too long. I dread to think what would happen if I'd waited.

She still has panic moments but I can now talk her round. We are getting closer She takes opportunities if she likes the sound of them. She is working out what works for her.

I still can't get her on holiday tho. Unless it's centerparcs even that is a struggle.

Maybe one day.

I hope that helps.

Oh and her dad. Is slowly getting there but he still doesn't read books or listen to podcasts about autism.

Men just want to fix. It can't be fixed. At least only by her and it's not fixing. It's just working out limits and tolerances. You can't force or practice it out of her. It has to come from her

Ssris were a huge help however.

Can it be neurodivergence if it’s essentially ‘brought on’ by Covid/social isolation etc? I thought neurodivergence was innate and there from birth?

I love her brain now I get it.
She is so creative and funny and so knowledgeable about topics she likes.

She just finds some stuff hard and that's fine.

Definitely don't try and toughen up. I liken it to a wheelchair user. Would you make them go up a set of steps? No of course not. So with an autistic DD would you make her socialise in the same way as you do? No. But we discuss how she might socialise, what makes her feel safe? What can she do to make it work for her?
Where my DD works they had a leavers day event and ball which threw her into a complete tail spin - panic attacks thinking about it.
We worked on what aspects of the day she could manage, when she could get some down time etc. In the end she did most of the day but not the ball. Next year I'm sure she'll manage the ball with prior notice and planning.
As parents it's about understanding what she needs to manage her life. Once she knows you are on her side and supportive, a lot of anxiety melts away because the pressure is off to conform.

With my dd it was there from birth. I can see it now. But as she got older she learnt to copy the other girls She is an expert masker.

Secondary school social rules can be too complicated for ND girls. They can't hide it easily any more and the anxiety starts. Covid just exacerbated it all.

I’m just surprised that for 15+ years a child can appear completely typical, at home and in school, even if masking I would assume there would be at least some signs especially earlier on as toddlers don’t mask.

Yep agree. Secondary school often is the unmasking of an autistic girl. The social rules are too complicated and anxiety results. Eating disorders too to try and get control. My DD was diagnosed age 17 but I jokingly said when she's was at primary school that "this girl is on the spectrum". How close to the truth I was, but I truly believe that she wouldn't have bee diagnosed at that age.

As a first time mum I thought my girl was sensitive. I thought she had a lot of tantrums

I thought her outbursts were normal.

I had no knowledge of autism in the early 2000's. Only wha the stereotypical view was.
Boys trains facts etc

If I knew then what I know know I could have saved my dd a whole heap of pain.

I'm sure that's why it's
Only Now so many girls are being diagnosed.

@Rainbowsponge wait until you hear about all the adults only now getting diagnosed!

@Kittycat1981 in terms of university. There is so much academic and personal support available for uni students that just isn't there when they are at school. Through DSA (disabled currents allowance) they are assessed in several areas. My DD was given tech stuff that she had no idea might help (it did) a printer and paper allowance so she didn't have to go into a crowded library, a mentor and brain in hand app to help het anticipate problems. Added to that an incredibly supportive uni (Durham) who had a separate moving in day and 2 day introductory course for the students with ASD.

Interesting to hear everyone’s stories- thank you.
i always just thought I was a reserved, sensitive and shy introvert but I’m not even questioning this and wonder if I am nd and can also see traits in my mother and grandmother!
no one has ever mentioned this and even my husband says no but I know I really struggled as a teen and even in my early twenties and I masked lots! I still find it hard when I’ve had a peopley day and go to bed early as I need downtime.

My 14 year old daughter was diagnosed this year. There were signs when she was younger but I didn't associate them with autism at the time as I didn't have enough understanding. It only really occurred to me when she started to suffer huge anxiety at school when she transferred to secondary, alongside the onset of hormones. The paediatrician told me it was a common time for girls to be diagnosed as many mask successfully in the more nurturing environment of primary school. Unfortunately, autism on girls and women is still widely misunderstood (as evidenced on this thread!).

It's been a very difficult time for our family and I wouldn't say we've had any additional support since the diagnosis. The only thing that has helped is I think my DD has stopped blaming herself for her difficulties, which has made her feel a little happier in herself. We have also tried not to make too many demands on her at home as we know it is so hard for her at school.

I'm not sure what advice to offer about holidays. At the moment our DD is still happy to go, but home is a sanctuary for many children with ASD which might be where your DD is coming from. I share your fears for the future - my daughter is very capable academically but hasn't attended full time school for over a year so I don't know if she will even get any GCSEs. Like you I can't see her managing university. Although I have heard people say that university and many workplaces are more flexible than school so those with autism can actually manage better than in school.

I recommend joining the Autistic Girls network Facebook page if you haven't already.

her dad and I have very different opinions- he thinks I pander too much and need to ‘toughen’ her up.

Have had this exact argument with my DH today! We have agreed a few very basic non-negotiables at home related to hygiene etc but try to keep the pressure off otherwise as she is overwhelmed by the pressure of attending school.

Glad to hear it’s not just me!
as someone earlier said I think men try to ‘fix’ things and he just can’t understand it. He thinks if we make her do things then it will solve the problem but it isn’t that easy.

I think it can be hard enough for men to understand their teenage daughters, let alone when they are neurodivergent. They do need to try to read up and come from a place of understanding though.

My daughters relationship with her dad was really bad. At one point I thought I'd have to choose. (It would have been her)

I put our names down for a charity that offered 8 week sessions at discounted prices to parents with newly diagnosed kids. Our councillor was amazing. She probably helped save our marriage. However he still pisses me off as he sometimes reverts to his old ways. Thinking she just needs to try harder or get used to something.
For example she was having a social problem with a few girls recently. That has exhausted her so she needs extra down time. In his eyes she needs to get on with it. 😡😡😡

Neurodivergence is a neurodevelopmental condition so from birth. Of course some people, especially girls are better at masking it but it's highly unlikely that they would get to 14 with no traits. It's more likely to be MH. I work in an nds team and there has to be evidence throughout childhood. We're well clued up on masking so we look at 'subtleties' which can add to the picture but would want evidence from other sources.

@HeBeaverandSheBeaver was that a local charity to you? I would find it really helpful to access something like that.

@circular2478

I'm sure the op hasn't put every part of her dds character down in a SM post

It wasn't until I really sat down and went through all my child's early life it came together. My dd is extremely bright and could mask like an academy award winner.

How can you claim it's just MH when you haven't even met the child.

My daughter lost her shit when she got to 14 diagnosed autistic at 17 she was masking for a long time and she was exhausted. It usually happens around the time when they have to negotiate relationships as they get older. So so difficult. I am still learning now how she operates, she is very brilliant though, but it's hard, for us both. Xx you have my sympathy- we have to be extra strong to support them

@lavenderlou
Yes A local charity. Hertfordshire