It suddenly seems so obvious that DD is autistic

[Isitlikelytobe]

DD is 13 and at secondary. It’s now clear to me that she is highly functioning autistic and I can’t believe I’ve only just realised. She masked all the way through primary but can’t manage any more. Reasons I think this:

Sleep- never slept more than a few hours from birth, barely sleeps now. Childhood spent trying sleep methods, all failed.
Eating - eats a handful of meals & won’t try any new food.
Self harming - started a few weeks ago (seeing a counsellor) I think due to not coping
Socialising - few friends, refuses to join any clubs. At primary refused to do ANY after school clubs even though her friends did. Have tried to get her to do Guides/Swimming/Gymnastics but she refuses. Goes to one session then cries about having to continue.

I guess because she has eye contact and has had friends and doesn’t have any sort of counting/obsessional behaviour I assumed she couldn’t be autistic. With the lack of friends at school, school tried to get her to join in with group activities but she refuses.

I know we’ll be waiting years for a NHS referral so going to have to try & afford private diagnosis.

I feel so upset to think she has a lifetime of not fitting in ahead of her. No one in my or my DHs family have autism so it’s a shock.

Oh OP I could have written your post.

My DD is the same age, and I've been speaking to the senco at her school for advice.

She has the socialising difficulties and has self harmed in the past. Doesn't seem to understand peoples emotions and doesn't know how to relate to anyone.

All those miserable years in junior school, I thought she just needed to get away from certain people and find new friendships. But here we are in year 8 with the same problems.

No advice, sorry, I just wanted to say you're not alone.

I've no advice either but wanted to wish you all the best & your DDs will both be fine given they have you guys as mum's to advocate for them.

Good luck both.

“A life time of not fitting in” while an understandable statement, I would honestly try not to worry. Now is the time when fitting in is the be all and end all, so obviously difficult, but as she grows up, goes off to uni/work etc, she’ll find her people

We made this realisation with my dd a couple of years ago, it all made sense why she’d never had hobbies, few friends, self harming, very rigid with textures, food, only liking specific clothes etc
She is now 19, doing an apprenticeship in the NHS and has just got her first boyfriend.
She was previously referred to CAMHS but didn’t qualify for an autism assessment as there wasn’t a trail of documentation throughout her schooling detailing her difficulties.
She is now on the waiting list with adult services for an assessment.
She sees a counsellor weekly through MIND and understands her difficulties better and recognises she needs to pace herself etc.
Some of it has come with her maturing and coping better with her symptoms. We recognised she struggled more with PMT and I now buy her Wellteen vitamins and a high Omega tablet which has smoothed out her hormonal highs and lows.
This is just my personal situation, I’m sure better qualified MN will be along in a minute but I wanted to say that with our dd she is coping better now she is older. Sending hugs and 💐💐

I guess I need to get in touch with SENCO at DDs school as a first step. We’re on half term & I’ve suggested a load of ideas for days out/activities for the two of us but she seems quite happy sitting in her room on her own. All. The.Time. It’s exhausting.

To be fair, that's normal teenage behaviour in this house Op!

everything you've listed could also point to an anxiety disorder imo, and there's a huge overlap between anxiety and the autistic spectrum. Glad she's seeing a counsellor, do you feel it's helping?

In my (personal and professional!) experience neither autism nor mental health struggles mean a lifetime of not fitting in - they might just mean fitting in with a different crowd.

No I don’t think the counsellor is helping at all. She’s had several sessions and nothings changed. DD suffers a lot with self esteem and zero self confidence which is why she started counselling.

DD is from a loving family, I’ve always worked part time so she’s always had someone at home and she’s been told since babyhood how well loved she is. Any yet she thinks she’s unlikeable.

Diagnosis could help avoid a lifetime of not fitting in, help her understand herself and how she fits in the world, and help you accept and understand who she is.

Many successful and happy people you come into contact with may be autistic without you knowing. I also didn’t see my daughter’s ASD despite it being really obvious in retrospect, she masked really effectively until early secondary school when it all got too much. And maybe I was a wee bit in denial as well. Diagnosis (private) has made a huge difference - she feels understood, she had worried she had a personality disorder related to how she experienced empathy and interaction, she is relieved to know she is autistic! It was hugely positive for her.

We and the school are making adaptations, she doesn’t have to mask as much, she is happier in her own skin - although still finding her way - but being open with friends and happier setting boundaries of what she can and can’t do. Lots of time in her room to decompress but then engaging positively with the activities she enjoys. I have changed my expectations of her, conflict is hugely reduced, I love her on her own terms and don’t expect more than she can give- the expectations I had for her behaviour and our relationship are my problem not hers. we’re happier as a family although obvs still challenges, but then her neurotypical sibling is also not without challenges.

We tried counselling prior to diagnosis without any success, diagnosis really was pivotal for us to start to support her properly and help us as a family.

Bear in mind what you see as a lifetime of not fitting in, may not be something she is bothered about.

Lots of the problems with ASD come from having to fit in. When you accept she's happier sat in her room than doing outings, then it doesn't look so bad.

I'd be miserable living the life some of my relatives lead (extremely socially isolated). They'd be miserable doing what I do (friends, choir, theatre).

I'd be miserable eating the same meal for lunch for 30 years. DH is miserable if he can't have a cheese sandwich (one with peanut butter, one with lettuce and salad cream).

Now you (think you) know, rethink what 'happiness' looks like for her. Stop the forced socialising etc. school is probably more than enough outside the house people exposure, for the moment.

My 16 year old daughter has recently been diagnosed. She has been struggling with secondary school all the way through, is now in 6th form. Very academic and a high a achiever.

Meltdowns, suicidal, anxiety have been ongoing. Lots of social difficulties, and her mental health has been really poor.

She's recently started working part time at McDonald's, and it's the making of her. I can't believe the difference in a few weeks. She works with quite a few autistic youngsters there, and has found others with the same difficulties who are managing life.

Things can be really difficult, but there is hope and having a diagnosis has made a huge difference.

There's a book my dd highly rated - the dbt workbook for neurodivergent people I think it's called, £10 off Amazon.

Also remember they do find their tribe - might be online (eg gaming) or like my dd, choir (she's professional now)

This book was recommended by my DD's phycologist

www.amazon.co.uk/Spectrum-Girls-Survival-Guide-Autistic/dp/178775183X/ref=sr_1_1?crid=127P772OCWDSD&keywords=autistic+girls+survival+guide&qid=1666594999&qu=eyJxc2MiOiIxLjc0IiwicXNhIjoiMS4yOSIsInFzcCI6IjEuMjMifQ%3D%3D&sprefix=the+autistic+gir%2Caps%2C98&sr=8-1

DD is definitely somewhere on the spectrum but refuses a diagnosis at this point.

While DD can be social if she is with her group. of likeminded friends, she also struggles a lot with social norms, recognising other peoples emotions, suffers from sensory overload.

Her therapy is also useful for DH and me, we learn a lot how DD ticks, why she ticks like she does and how to help her.

Yes, she will have a lifetime of being different but the end goal of everything is helping her to navigate in a NT world.

You didn't do anything wrong in bringing her up, it doesn't matter if everyone else in the. family is NT (it could very well that you have undiagnosed relatives)

The lifetime of not fitting in is a very thoughtless thing to say, I am autistic and I have always had a huge range of friends. It's probably why I wasn't diagnosed until my 30s and why I thought there was no autism in my family when my son was on the waiting list. It turns out I just didn't really know what autism was and how it presents in different people, my family is SO autistic!

I would highly recommend seeking a private assessment instead of diagnosing her yourself or based on comments on here. I agree with a pp that your reasons could be an anxiety disorder, not necessarily autism:

Sleep- never slept more than a few hours from birth, barely sleeps now.
Nothing to do with autism- could be anxiety caused insomnia

Childhood spent trying sleep methods, all failed.
Nothing to do with autism- could be anxiety caused

Eating - eats a handful of meals & won’t try any new food.
Yes, this is a sign of autism

Self harming - started a few weeks ago (seeing a counsellor) I think due to not coping
Unlikely to do with autism as it’s just started. Usually autism related “self harm” is banging your head or hitting yourself or pulling your hair and this starts as a toddler- well before they know how to mask. More likely to do with anxiety or a personality disorder unless you’ve forgotten toddler things she’s done?

Socialising - few friends, refuses to join any clubs. At primary refused to do ANY after school clubs even though her friends did.
Yes this is a sign of autism, but also could be social anxiety.

OP try to remember that nothing has actually changed. She’s still exactly the same person she has always been and you’ll use the same strategies etc to be her mum as you would with anyone.

HF ASD is still little understood in girls but comes with so many benefits, honestly.

I understand your fears.

However, I am autistic but wasn’t diagnosed until my late 30’s.

My DD was diagnosed at 9.

Her experience is so much better than mine was as we can talk about it and she understands herself. She understands that she is not alone and that there are lots of other people “like her” and that she needs to take time out when needed, that there is a reason she is so stressed out by things and a reason that she feels awkward around other children at times.

When I told her about her diagnosis (she understood about the assessment and we had talked about neurodivergency already ), I later asked her “Does that make you feel better or worse?” and she said “better I think”. I bought books for her to read. She chose to tell some people about her diagnosis.

Her experience of growing up will be so different to mine (I always knew something was “wrong with me”, in my mind, but I had no idea what it was 😂). It was really really tough at times and I wish I’d known so much earlier that I had a different brain and that there are positives there too.

Having said that, I still somehow felt blindsided by my DD’s diagnosis and felt I should have seen it earlier. I was also upset and worried about the future, even though I already knew it still felt overwhelming (at first) to have it confirmed.

My DD is also on a reduced timetable now at school as her mental health was so affected by being full-time. I still fight and fight for adjustments- as she masks in school and is seen as bright so school didn’t really believe me pre-diagnosis.

It’s hard going but we are doing it together and still learning together (she is obviously different to me in many ways, I understand her sensory issues and her autistic traits but we are still different people so I really need to learn about her and what helps her).

There is a Facebook group called Parents of Autistic Girls UK , which might be of help to you.

I strongly recommend a book called “Can you see me?” Libby Scott, which is
fiction but is written by a young woman who is autistic, and it’s about a girl surviving her first year of secondary school. My family members read this and I think it taught them more than textbooks did.

Finally, I recommend an Instagram page: thisisimmie , a very articulate young woman who talks about her experiences and who I don’t think was diagnosed until her mid-teens. My DD has watched the video clips and got a lot from hearing about the positives of being autistic.

Good luck, it it’s natural to be worried, but you can do this together now.

(If you want information about the organisation that my DD got her diagnosis with, then feel free to PM me. We got it NHS funded but don’t know it that is available anymore, I know they do private assessments though.)

I’ve suggested a load of ideas for days out/activities for the two of us but she seems quite happy sitting in her room on her own. All. The.Time. It’s exhausting.

It's less exhausting if you accept that this is a real need. Her room is her recovery place from the demands of the outside world.

Have a look at "spoon theory" and keep in mind that even enjoyable activities can cost her spoons. Socialising may cost her a lot of spoons, maybe more if it's in a group or when she's starting off a new unfamiliar activity. One good thing about diagnostic assessments, it's ot just about the diagnosis, it;s also finding out what is easy and what is hard for her, what costs her spoons and what restores them.

Rather than "days out/activities" for the two of you, can you find simple activities that she doesn't find too demanding? Baking a cake together? Walking the dog? Walk round a familiar park? Watching a TV series or streamed film together? Maybe a small trip out, just for half a day? One or two things you can build into a relaxing evening or non-schoolday routine.

She may or may not have enough traits for an ASC diagnosis, she may get a different diagnosis, and sometimes it comes down to the judgment of the clinician(s) involved and which tests and processes they use. Do get her onto the waiting list for NHS assessments as well if possible, even if you also go private. It depends where you live but LEAs and state schools don't always support private diagnoses because of consistency.

I feel so upset to think she has a lifetime of not fitting in ahead of her.

If she has autism then it's easier to fit in with a diagnosis than without. It's ups and downs, but then she's already having ups and downs. Understanding what's behind the "not fitting in" will help her feel comfortable with herself and help her fit in with others better too

No one in my or my DHs family have autism so it’s a shock.

It's quite common that as the shock wears off and we parents find out more about how autistic traits present, we start noticing things about other family members

I feel so upset to think she has a lifetime of not fitting in ahead of her.

Just picking up on this...

I was late diagnosed, very late (40s) and one of the most important things I took from that diagnosis was freedom from your statement. I realised I don't have to fit in. I'm not weird or abnormal, or even unlikeable, I just don't need to be the same. I don't need to fit.

I have been set free from a lifetime of trying to fit in. It's massively liberating. Don't feel sad that your DD isn't the same as the rest, take the positive- a diagnosis now has the power to free her from the trauma of trying to fit in a world that is not for her.

Also, with regard to her wanting to sit in her room all the time and also self harming , look at “autistic burnout”.

If you create a low demand environment ( which might look like staying in a fairly dark room a lot while playing on her phone and watching tv) then she can rest and began to recover.

I’d also give her at least a week of school as part of this (although schools can be a bit sniffy about time off for poor mental health, despite banging on about how much they care, so maybe a ‘bad stomach bug’ could cover you for a week) and just let her regulate herself.

I know it’s hard to see, and it seems counter-intuitive, as going out for walks/time away from screens etc are seen as “good things” and staying in a room with screens is seen as “bad” - but autistic teens often use screens to switch off and regulate.

You could still interact but be led by her, while he mental reserves as so low. Would she like a popcorn and movie night? Cooking with you? Whatever her thing is, she should come towards it when she starts to feel better and the pressure is off.

*another week off school, as you are probably on or have just had half-term

Another “getting out” suggestion - would she come out in the car with you, get a McDonald’s drive through and then go for a drive around? (Still in her pyjamas/Oodie whatever, if she wants)

I realise this is another idea that doesn’t sound very healthy! I’m trying to remember what helped by DD when things were really really bad, pre-diagnosis, when she had two weeks off school as she had burnt out from the strain of masking all the time.

This is my dd. We’re waiting for an assessment.

Shes 16, the start of 6th form was very hard, she’s settling a bit now.

As for not fitting in. She talks about ‘popular girls’ Not always in a complimentary manner. I always tell her that the people who don’t ‘fit in’ are the most interesting. Her time will come.

Do you have adhd in your family? Also can be inattentive adhd. Under diagnosed in females as mistaken as anxiety.

Your daughter sounds just like me as a youngster, and also my 16yo son. We are autistic.

I bet there are other autistic people in your family- it doesnt come from nowhere- it was just poorly identified in the past.

Diagnosis means that you and she can work out new better ways to exist. I have a full and generally happy life and understand myself so much more, my son is growing up able to honour the way he feels and how to look after himself and make a life that works for him.

Agree with pp that as a parent of a child with an ASC I see "healthy" things that other people don't. A rest needs to be whatever your child finds restful, and the most important thing about an outing with Mum (or any other outing or social intraction) is that DD has to enjoy it so she'll want to creep out of her room again in future. You start from where they are, not where you want them to be.

I view screens as a mixed blessing. I never worried about TV or gaming, DS found them calming and they didn't stop him doing the necessities of life like homework sleep etc. I liked the social aspect too because he found real life socialising tricky, but socialising online can be a minefield. Playing games, good, and talking about games, good. Talking about selfharm, not good.