Need help coming to terms with everything

[SpookySpoon22]

My DD had a late diagnosis of ASD at 15 and although that came as no real surprise, I'm really struggling to come to terms with how much her life has changed since 'the wheels came off' a year ago and she stopped being able to attend school. I keep looking back to how much she was able to do when she was younger and how much happier she was. Nowadays her sensory difficulties are off the chart and she struggles with OCD and social anxiety among other things. We can't live a normal life as everything is restricted by what DD is able to tolerate. What breaks my heart the most is how nearly all of her friendships have fallen away, including those who she had known and met up with frequently for years (some since a baby). Even one that DD thought was rock solid. She's really sad about it. It appears that all of her peers have moved forward in their lives which are filled with going out, boyfriends, school, part-time jobs etc and DD has been left behind. She finds it hard to know what to say and to find common ground now. I just can't believe the difference in how her life was and how it is now. It seemed she was headed the same way as her peers and has now taken a completely different path. It feels like a shock to find myself fighting for an EHCP, PIP, getting therapy etc. The difficulties were always there but are now so evident. Most of all, I just feel sad for my gorgeous daughter who is struggling so much with just the every day things of life.

Perhaps this isn’t universal but I personally found that with my DS (ASD, ADHD, Dyspraxia) things went really downhill in the teenage years but improved significantly once he reached the early 20s. It got really bad between 13-19 but he’s 23 now and has begun to carve his own groove rather than fight against the mainstream funnelling,

Adolescence is difficult for most people but purely from an observational point of view it seems particularly difficult for autistic teenagers, especially those who were successful maskers in childhood who felt bewildered as their peers changed around them.

Changes come so quickly in the teen years it’s not surprising that kids who already struggle with change and recognising social cues develop anxiety as all changes around them (and their own bodies change too). Thankfully the rate of change slows down significantly once they get to 22-23 ish.

Finding a local friend with similar challenges mightt be helpful and good for self esteem building - in an ideal world that could be facilitated via social and support groups for autistic girls but I realise it’s not that simple, especially if a teen is firmly in the ‘not leaving my bedroom’ phase.

Perhaps finding an activity that is appealing enough to override the anxiety might help? Even if it takes ages to build up to actually doing it?

My DS picked special interests that were on the cooler side (skateboarding, the music of Nirvana) found casual, no pressure friendships that way. I hope that even more niche interests might lead to a small community of sorts?

Try not to think about what your DD’s peers are up to, your DD may well find her way to similar destinations in her own time, eg uni as a mature student when it’s easier to concentrate on the learning without the horrors of being thrown into a flat with a bunch of perplexing (and loud) 18 year old strangers.

Do what you can to protect your DD’s self esteem (which can be hard when dealing with various assessments and writing out applications that document difficulties in minute detail) and to reassure her that there are more opportunities to adapt the adult world in ways that work for her than there are in the school years.

The best thing I ever accessed after my DS diagnosis at 13 was a short course for parents run by the occupational therapist service - it really helped me understand sensory issues, to make simple changes in the home environment and learn to ‘pick my battles’ (eg my DS had meltdowns in the supermarket, once I learned it was due to the sensory overload due to strip lighting I changed my shopping habits and pretty much halved the meltdowns. As he got older some of the sensory issues changed/faded and now he works in a co op part time while studying. He still hates Tesco tho! I think it’s just too bright/white for him!)

Have a look around and see what’s available to help you, help your DD, especially if she’s currently reluctant to engage with services or education directly.

Also, ask everyone you have an appointment with or speak to re: any NHS/Education stuff for their full name, job title and contact details and keep a record.
Get a copy of every bit of paperwork and keep it in a big folder as a ‘master copy’ (don’t give it to anyone but let them make their own photocopies while you wait). You never know who you will need to speak to again in the future and you don’t need the hassle of a wild goose chase trying to
track down old files stored in dusty cabinets in the back of beyond.

Contact your GP re: getting permanent permission to speak to them on behalf of your DD (she’ll have to consent in writing) because it gets a lot harder to effectively advocate for adult children due to privacy laws.

The NHS is moving away from giant paper records towards digital records and app access, which is theoretically great but absolutely useless if it can’t be accessed when needed.
Best to try and keep a paper record for when digital records fail, plus you can organise your own records by whatever index suits you, rather than one imposed by NHS IT systems.

Hopefully in a few years time your DD will have made it through the adolescent years, have worked out what outside adaptions she needed to make the world to work for her and will be carving her own groove and you will be replying to other parents, telling them to keep their own records!

Thanks so much @TathingScinsel for taking the time to reply so fully to me. Apologies I can't respond properly at the moment as DD is with me but I will reply later on. Your post gives me hope that things will improve! Thank you x

Ok, I can reply more fully now 🙂

I completely agree that things are likely to be extra tough during adolescence and quite a few things you said resonated with me. She was indeed a successful masker in childhood who can't understand why others have changed so much. Life just became too overwhelming and anxiety-laden. So she withdrew, which was absolutely the right thing at the time as she had completely burnt out. But it's the getting her back out there, even with support, that is now the problem. I can do everything right in terms of getting her support and help but I can't force her to do what I know is best for her. I can only advise, gently encourage and hope for the best! But it's so hard when even getting dressed into something tolerable is a struggle each day. I really hope things get more manageable for her as she matures. Small steps!

Thanks for the advice re the paperwork. I actually have a folder but haven't got around to sorting and filling it yet so that's given me a nudge!

obvs it’s all a spectrum and one experience may not mirror another but my DS’s sensory issues, especially regarding clothes, was most intense in the toddler years (when he would randomly strip naked whenever I looked away for five minutes!) and the teenage years, (when I had to buy extraordinarily expensive school uniform from specialist suppliers because he couldn’t tolerate that polyestery-stain-proof, no iron fabric that the vast majority of school uniform is made from).

My boy is quite a natty dresser (loves bright, clashing colours) and was mocked relentlessly at the teen stage where they all police each other’s adherence to fashion trends. Now he’s 23 no one ever really remarks on it at all, so of course his social anxiety has lessened!

Learning to pick my battles has been a massive part of helping him relax into himself - I used to be embarrassed by his preference for really strong flavoured foods (eg anchovies straight from the jar with a teaspoon!) but the occupational therapist course for parents really helped me get it into perspective which in turn lessened my frustration.

eg my DS went through a stage of only eating a particular brand of chicken tikka microwave meal, lasted about 6 months.
Would it have passed any quicker if I had argued with him every day about it?
z so No! And it might’ve made him dig his heels in and gone on for longer. Instead I found a good multi vitamin that he was willing to take (gummies, he hates the big pill-kind) and kept my trap shut.

re: clothes, if your DD finds something she likes, buy 3 of it. It doesn’t matter if she looks like she only one outfit, as long as she has enough multiples to have a fresh one available.
Same with toiletries and hair styles and everything else, if she feels comfortable, buy multiple and don’t try and chivvy her into change unless it’s absolutely necessary (F**K You discontinued products!)

Let her find her comfort level and then gently encourage her to expand her range at her own pace.

When I look around at my favourite adults they are pretty much all ND in some way, doesn’t mean they don’t have relationships and friendships, they just needed find other quirky people, people who accept that the chips can’t touch the beans and don’t make a big deal out of it.
It’s much easier to find those people outside of the high school years.

I’ll see if I can dig up the sensory questionnaire that the OT team uses…

I dunno what that’s about, I don’t think my post contains anything controversial!

Hi I am in a similar situation - my DD was diagnosed with ASD last year when she was 15. Although she missed a lot of secondary school she managed to get enough GCSEs to start at a different sixth form last year but couldn't cope and is now out of education again and becoming very depressed as her friends move on with their lives and she feels extremely isolated. It also feels in terms of support that she is in a black hole and there are limited opportunities for her to get back out there and meet other young people like her or join support groups as she is too old for a lot of the local support groups or home ed groups for young people and too young (particularly in terms of maturity) for any adult groups. We also live in a fairly 'elderly' part of the country anyway so lots of local social/activity/sports groups are for retired people rather than youngsters. I have been trawling the internet to find out what support is available locally and the local autism group is quite good. I have also asked on our local SEN and 'not in school' facebook pages whether anyone has children locally in a similar position. I don't know if that might be an option for you? I am more worried about the social side of her life more than anything else as she is becoming depressed. She has tried volunteering and has a very small (one morning a week) job and runs so that she can feel that she is achieving something. Sorry that probably isnt very helpful but it gave me the chance to overload how I am feeling!

*offload not overload

@cloughie100
Your post really resonated with me.

DD is almost 17 and we had an Add diagnosis this week
She is also most likely autistic.
She is struggling to stay in 6th form and last night said she would drop out but is hanging on for some social contact. Friends are all understandably getting busier with studies, uni applications and boy friends.
It made me upset as she doesn't have any close friends and has always been on the periphery of a large group.
Like you said there is so little outside or school for her to go and do.
She dropped her hobbies recently and is mostly home in her room.
More than education, I fear for her social isolation especially because she is desperate for it.
She does have a small job too but it is only a few hours a week.
I just wish she finds a tiny hook to latch on to.
It's so hard to watch them so lost.
Xx

@TathingScinsel thanks - we have had OT advice re the sensory side of things and I've read a lot about it but we're in a catch 22 of DD not doing the exercises that should help because she says they make her feel worse. We have spent so much money trying to find clothes that she likes and are comfortable but she still really struggles with these. I hope that like your son, her sensory system calms down after the teen years. I also hear you on the multivitamins! Plus the picking battles thing.

@DarkChocHolic and @cloughie100 this journey feels so painful at times doesn't it! I'm sorry your DDs are also struggling. It's so hard to watch and feel pretty powerless to help. There must be so many young people like ours in this position. I hope in future there are schools and colleges especially for autistic but academically able children and young people who cannot cope in mainstream. Then perhaps their self-esteem and happiness would be still be intact - and they'd have friends!

(edited as posted too soon)

I do suspect things have gotten worse for ND kids (especially the great maskers/late diagnosed ones) as schools have become less flexible (National Curriculum, everyone doing GCSEs, multi academy trusts that set the same rules for every school in the group) and perhaps most importantly, much bigger (my 80s comp was about 700, whereas every school where I live now is 1500ish).

There isn’t a single child in the world who wouldn’t be better served by smaller class sizes, and for ND kids the intensity of getting 1500 kids through the dinner hall in a fixed time frame is often completely unbearable.

ND kids either need an extra tier of special schools (for children who have SEN but still able to achieve average to excellent academic results) or the era of supersized schools needs to be rethought for everyone.

It’s just not feasible for parents of ND kids to force their distressed children into factory schools indefinitely (and ends up costing more money in CAMHS than they save anyway).

Most families need both parents in work to keep a roof over their heads which takes away the option of homeschooling too.

It’s just rubbish all round, and Covid lockdowns have unintentionally intensified the social anxiety and subsequent school-refusal of children who were hanging on by the skin of their teeth.

@TathingScinsel agreed! Incidentally, my DD coped well in Year 8 due to Covid because each year group was restricted to one part of the school so it felt like a much smaller, more predictable place with the same classrooms and children in each lesson. More like primary school but for older children.

There were a lot of advantages to ‘bubbles’, staggered starts, eating lunch in the classroom, dedicated outdoor spaces/times, wear your PE kit all day, teachers walking to the kids’ bases rather than vice versa. And being allowed to stay home when poorly.

@SpookySpoon22 I could have written your post, We've been going through the same thing with our 15 year daughter. I don't have much advice, but I can relate so much to the sadness you feel. It's a strange situation to find yourself in when the earlier years seemed less of a struggle. I remember back to when mine was a younger child. She must have masked so well. She just seems so, so autistic now, I honestly don't know how we missed it. There's a lot of guilt, frustration, shame and sadness to unpack, as well as the constant daily worry of what the future holds for them. All these feelings are valid and understandable and I believe we shouldn't feel more guilty for feeling this way.
I believe we should be hopeful for the future. As previous posters have said, these years are likely to be the hardest with the expectations that are placed upon them and the raging hormones etc.
Is your DD doing GCSEs this year? Mine has been off school since Jan and it's a worry about the exams in the summer.

I don’t know if this makes mums-of-ASD-girls feel any better re: not getting an earlier diagnosis but when my son was (finally) diagnosed with ASD age 13 I did a short course for the parents of newly-diagnosed teenagers (run by Manchester CAMHS, so big, diverse city) and I was the only boy parent out of about 60 attendees.

The course leaders said that the similar course for parents of newly-diagnosed preschoolers was almost all boy parents 🤷‍♀️

Whether this is a legacy effect of the old belief that only boys could be autistic (so teachers and health visitors aren’t looking for it in girls) or because girls in general are really good at masking until puberty makes the gap between them and their NT peers more noticeable no one was able to say (probably a bit of both).

The course I did with the Occupational Therapy team was all boy parents of under 5s and me, a teen boy parent.
I’m still in touch with a lot of the parents I met through that course (8 years on) and several have since received a diagnosis for their son’s sisters (including a pair of boy/girl twins, where the boy was diagnosed aged 2 and the girl at 11!)

My son’s diagnosis was ten years ago, so perhaps girls with ASD are more likely to be picked up on at school now? Although with public services creaking at the seams I doubt that translates into earlier diagnosis or (goddess forbid!) actual practical help.

(I always suspected my son was on the spectrum but he was a good masker and has an unusually large vocabulary - taught himself to read via TV subtitles way before he started at primary school. Absolutely no one agreed with me until he started school refusing around the time of the transition from primary to secondary. He was diagnosed with dyspraxia at 11, ADHD at 12 and ASD at 13, a fairly common ‘cluster’. The Ed Psych who did his psychometric tests said he had the ‘spikiest profile’ she’d ever seen, below average IQ in some areas (spatial puzzles) and super genius in others (verbal reasoning). He must’ve been using his strengths to mask his difficulties, which sounds exhausting, frankly!
My son’s EHCP was finally signed off on the day he picked up his GCSE results, A* for English, F for Maths 😂)

@TathingScinsel thats really interesting what you described. It was similar for us too. My son was diagnosed with ADHD at 8, then ASD at 10. Poor DD went unnoticed all that time. I think we were so focused on the needs of my son. She seemed shy and slowish with school work but generally managing OK ish at primary. By year 9 the wheels were starting to loosen and here we are year 11, no longer attending school. ASD diagnosed at 15. The mask is truly off now and she can finally know the reasons why she finds life so hard. It's definitely an extremely common thing with ASD girls. Unfortunately I think it's only when their mental health has suffered that the problems become apparent. It's societies' fault really as girls are expected to go through life pretending everything is fine when it's really not.

You are all making me feel so much less alone, thank you! So many parallels to all of our stories.

@Theordinary DD was not able to return to school this year so is doing a small amount of online learning instead hopefully leading to a couple of GCSEs. No idea what the future holds but I've had to adjust my expectations as her mental health comes first. I've run the gauntlet of emotions in the last year that's for sure! I'm sure you're right that it's normal to feel this way.

@TathingScinsel that's so interesting to read about the boy/girl ratios on the courses. It does help to know that, thanks.