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.

I also have a 17 year old DD, diagnosed last September. We started therapy as she was suffering from anxiety and panic discorder, self harm and suicidal thoughts since Covid lockdown no. 2. It took a year for her to agree to see a GP.

When she was 7 she was a paediatrician as we suspected ADHD but looking back it was clear that all ASD signs were there. But as a typical girl, she fell through all nets.

She now attends therapy to learn what the diagnosis means for her, how she wants to live in a NT world. We see slowly progress and when we had a parent meeting with her therapist, we learnt also a lot about how her brain ticks.

DH - yes, he wants to help in a practical way but he learnt the hard way that it doesn't help. He is as frustrated as I am but I think he learnt that there is no fixing.

@Kittycat1981 - we did our first university open day visit and had a long talk with their disabitly team. They were amazing, there is a lot of support out there, she can apply for the same exam help she has now in 6th form, there are grants for techology and mentoring. They get help with dorms to suit their triggers and even priorty to stay in dorms instead of private rental which is something DD is terrified of as it means dealing with other people.

This has been an eye opening read. I posted a few days ago about my dd struggling to navigate friendships and high levels of anxiety. She is a skin picker and presents herself very different on from a lot of 14 year old girls. She's a twin and I would say is about 18 months behind her sister in terms of emotional/ social maturity. She has friends but struggles to maintain close friendships - always has done.

If I look back, she was a very early walker but speech wasn't easy and she had a couple of SALT sessions. However that was put down to a couple of physical issues and having a v loud twin and nothing behavioural was mentioned. Other than that school never flagged anything at all. She's academically bright and contributes. She's always had 'enough' friends and was a very social and popular little girl although that had worsened as she's grown up.

Like others Covid in yr 5/6 then puberty and starting secondary hit her hard and a lot of previously minor anxiety traits hit her like a tonne of bricks. She did some really out of character things, dumped what friends she did have. She's rebuilt that up again but the anxiety flares very easily and she's definitely got quite bad social anxiety.

When I read these stories I do think she's not 'that bad' but also I want her to thrive as she grows to adulthood. Off the back of this I had did have a chat with her yesterday and she thinks it may be useful to speak to 'someone'. To a pp posters point it may be anxiety or may be asd or maybe just her but I think both she and I (and her sister and dad) need a bit of guidance to help her with that.

We live by a great beach so don't bother with sun and sand holidays abroad, we do lots of shorter holidays in the UK to Premier Inns (always the same decor, same sort of food etc so predictable), factor in travel days where that is just what we do or check in early and go out in the evening.

Know the rough plan advance, DD jokes that the itinerary needs submitting in writing 24 hours before - but there is some truth to it. She finds it much easier to remove something from an itinerary than add it on.

Noise cancelling headphones, always even if she thinks she won't need them. Try and view them like a pair of glasses which you wouldn't go out without.

Find out where quiet spaces are at venues before we go. London attractions are good for this particularly the galleries and museums.

Lots of quiet downtime, try not to ask too many questions or for her to make too many decisions if likely to be overwhelmed.

However as others have said, some sort of quirks must have been present from toddler hood onwards. DD thrived at Primary and was very bright and well liked but there were always quirks and they got a lot worse after COVID and starting Secondary school but they were always there and we have several family members who are undiagnosed but have strong autistic traits going back through all living generations.

Autism is largely genetic so if there are no signs of it within the wider family, and no signs of it before COVID then it's likely not autism.

In terms of uni, we are a few years off that yet but. A trying to work my way up the career ladder because I know sell need extra financial support, will need a single room with an ensuite although a one bed flat would be better. Will likely not be able to work and study so will need help there.
We go to events art shows/theatre productions/ museums/use the sports facilities/ at our local uni and further afield if in a topic DD likes so she can see uni life, although I would have done that without the autism anyway

@Singleandproud I agree with plans. DH and I were away a weekend on our own and it was refreshing to not plan ahead everything all the time, just walking around looking for a place to eat instead of pouring over menus days in advance.

While I agree ASD has a genetic component, don’t forget a lot of people weren’t diagnosed in the past. DD’s first therapist who put us on the path towards diagnosis said to think about family members who were quirky or very introvert. I do think in today’s world one uncle and maybe even my sister would get a diagnosis but they were born 1936 and 1964 respectively.
Most people still see ASD as it is portrayed in the media like Rain Man.