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Original poster

Dd5 just diagnosed with ASD. Need a bit of a handhold…

51 replies

FirstFallopians · 01/06/2023 21:04

We knew it was coming- I self-referred to SLT on her 2nd birthday, so this has been a long, long time in the making. She has a severe speech delay, but isn’t non-verbal.

They confirmed ASD- they said her functioning was severely impaired due to her unwillingness to engage outside her own agenda, but the doctor and SLT both said could see there was more that she wasn’t showing, potential there to be “unlocked”. No Learning Difficulties.

The language used was a bit of a kick in the teeth to be honest. This is the girl who went into the kitchen last week and made herself a Nutella sandwich.

I knew it was coming but I’m fucking terrified of the future. Will she be happy when she grows up? Will she be able to have any type of job? Will she be able to have any kind of independence?

Any supportive comments would be well received… (also any personal stories would lovely right now)

OP posts:
Techno56 · 01/06/2023 21:13

Don't rush yourself to feel ok with the idea.

Find some local parent support groups and inform yourself with courses of they're available locally, but don't go looking to "fix" everything.

I was an absolute information gathering machine for a year after my son was diagnosed and then I had to step away from it all (Facebook groups etc) as I was on the verge of having a breakdown.

Try and find out what help she is entitled to at school, think about whether an EHCP is needed maybe now, or might be in future (they take a long time to get and can be a struggle)

Don't lose hope, some skills you can't possibly imagine will come with time, maybe a long time.

Don't project what your idea of happy is onto your child.

Basically be very very kind to yourself as it's a big thing to process and you cannot "fix" it but you can make life easier and better for you all.

coodawoodashooda · 01/06/2023 21:14

She is being measured about how she manages. That's not the same as how much she is capable of. Its very early days.

NuffSaidSam · 01/06/2023 21:17

Don't project what your idea of happy is onto your child.

This is absolutely key. She may not be capable of doing the things that have made you happy, but chances are those things won't make her happy anyway. If supported to be who she is, she'll find her own happy (and that may well be something that to you/outsiders looks miserable!).

Interested in this thread?

Then you might like threads about this subject:

SEN
NuffSaidSam · 01/06/2023 21:17

And be kind to yourself.

Itsanotherhreatday · 01/06/2023 21:18

She’ll find her way and her passion.

I can spot ASD as I worked with a lot of children with it.

Most of them function perfectly well and you wouldn’t notice unless ‘you know’.

An awful lot of ASD are very high functioning - they just don’t fit socially for a long time and can be secondary to being good at what ever is their passion.

I think you are overthinking this - a good school and consistent parenting will be key to her development

TeenLifeMum · 01/06/2023 21:20

This is good news because you’ll be able to access school support etc. listen to reliable sources of info but do not lose sight of the fact that you know your Dd best. Don’t doubt that.

h3ll0o · 01/06/2023 21:22

Autistic here. Barley spoke as a child, came into my own at 16. Have spent many years working as a teacher in FE, then leading staff development in HE. My husband is aLao autistic and earns 6 figures as a senior manager, despite having a deprived background.

Children develop at their own pace. As someone who has one of those awful reports that doesn’t accurately reflect who I am I would not seek a medical diagnosis for my daughter. Im conscious I wouldn’t have learnt that lesson if it wasn’t for my lived experience.

Techno56 · 01/06/2023 21:24

The thing that has helped my son the most (in my opinion, as he wouldn't know what to say if I asked) is make her life as manageable as you can, because being autistic is very very tiring and overwhelming in various ways with the way our world (and school) is.

For my son this looks like ...more help and more slack given with house chores, organising himself, social expectations/obligations, letting him eat what he feels comfort with, not forcing him to "do things" all the time (school is hard enough). He is 15 and I often drive him to school even though he can get the bus. Or I pick him up from the bus stop when he could walk. I help him with his homework even though he could do it alone. I reduce pressure wherever I can so that he has the capacity to manage pressure that I can't control.

It looks like pandering or helicopter parenting or spoiling probably, but it's not, it keeps him mentally well and allows him to focus on the stuff I can't do for him.

I realise this is all a lot less relevant for a little one, but if you keep it in mind it will still help at various stages of development.

Also, let her stim and fidget if she needs to without telling her off. I didn't know my son was autistic until he was 9 and I deeply regret the things I told him off for or showed frustration over when he was little.

LemonInaMug · 01/06/2023 21:30

@Techno56 I love your post, you described me. My DC is 10 and not diagnosed but I think is very likely autistic but I get slack for the helicopter parenting. People tell me I baby my DC too much and do too much for them therefore I’m not letting DC be independent or fend for themselves. I don’t know if I’m right or these opinions are right, I’m always caught in the middle feeling confused about what to do.

Original poster
FirstFallopians · 01/06/2023 21:33

TeenLifeMum · 01/06/2023 21:20

This is good news because you’ll be able to access school support etc. listen to reliable sources of info but do not lose sight of the fact that you know your Dd best. Don’t doubt that.

Thankfully we are very lucky with the school- very supportive, small class sizes and a wonderful classroom assistant who she works with 15 hours per week. The teachers all know her, and when she’s doing her ignoring or being defiant they say “Oh that’s just DDName.”

We’ve seen her build on her social skills massively since Pre School. Yesterday I scolded her for rowing with her little brother and she looked at my annoyed face, put her little chunky arms round my neck and said “oh mummy, I love you.” to try and make me smile. I’ve never been so delighted to be emotionally manipulated.

It’s just so hard when you allow yourself a little glimmer of hope and then a medical professional dashes it with their (accurate, and very much needed) diagnostic language.

OP posts:
FiveGoMadInDorset · 01/06/2023 21:33

My ASD DD is now just ending year 12 and looking at doing law, she struggled in primary and blossomed with friendships and school from about Y9 onwards, home is still a struggle as her reaction ship with her brother is very fractious and how she manages it is immature but it is up and down. She also has delayed speech, has fixed ideas on what food she likes and a routine she struggles to veer off it which is stressful at times!

FiveGoMadInDorset · 01/06/2023 21:35

Had delayed speech, she is very articulate now!

Techno56 · 01/06/2023 21:41

My barometer is whether my son is mentally well. If he is, but is also developing independence (gradually) and I'm not being completely sucked dry by doing what I'm doing, then everyone else's opinion can fuck off 🙂

Techno56 · 01/06/2023 21:41

@LemonInaMug sorry my last post was meant to tag you x

Techno56 · 01/06/2023 21:46

FirstFallopians · 01/06/2023 21:33

Thankfully we are very lucky with the school- very supportive, small class sizes and a wonderful classroom assistant who she works with 15 hours per week. The teachers all know her, and when she’s doing her ignoring or being defiant they say “Oh that’s just DDName.”

We’ve seen her build on her social skills massively since Pre School. Yesterday I scolded her for rowing with her little brother and she looked at my annoyed face, put her little chunky arms round my neck and said “oh mummy, I love you.” to try and make me smile. I’ve never been so delighted to be emotionally manipulated.

It’s just so hard when you allow yourself a little glimmer of hope and then a medical professional dashes it with their (accurate, and very much needed) diagnostic language.

Show quote history

It is so hard reading the reports and when I watched my son complete his ADOS assessment I had to stop myself from weeping because I wasn't actually sure if he was autistic until then. But it was SO obvious at that point and it made me so sad.

But knowledge is power and an early diagnosis can only be positive in my opinion. Put the reports away for a while xx

IJustHadToLookHavingReadTheBook · 01/06/2023 21:51

I know these stories sound glib but my sister- aged 35- just got married literally last week. She has a successful career. If you'd met her 30yrs ago you'd never have seen it coming. She wouldn't speak outside of our house and even then not much. She would whisper into my ear at our Nanas house so I could tell her what she wanted. She was selectively mute well into her teens.

I'll say probably the best thing my parents did was have no expectations of her. She lived at home until she was 29 and met her now husband. They took her for what she was and never tried to make her what she wasn't. She's not like everybody else, but she is who she is and as a family we've always tried to let her be her.

Good luck. It's a long road ahead but it's not all darkness.

Original poster
FirstFallopians · 01/06/2023 22:02

IJustHadToLookHavingReadTheBook · 01/06/2023 21:51

I know these stories sound glib but my sister- aged 35- just got married literally last week. She has a successful career. If you'd met her 30yrs ago you'd never have seen it coming. She wouldn't speak outside of our house and even then not much. She would whisper into my ear at our Nanas house so I could tell her what she wanted. She was selectively mute well into her teens.

I'll say probably the best thing my parents did was have no expectations of her. She lived at home until she was 29 and met her now husband. They took her for what she was and never tried to make her what she wasn't. She's not like everybody else, but she is who she is and as a family we've always tried to let her be her.

Good luck. It's a long road ahead but it's not all darkness.

Oh stories aren’t glib at all! I love hearing how people with ASD have made a life for themselves where they’re happy, however that presents.

I really envy DH- he really lives in the here and now and truly believes DD will be fine, ie happy. I’m worrying about problems that may or may not occur years in the future and it’s just bloody exhausting.

OP posts:
FiveGoMadInDorset · 01/06/2023 22:12

My DH was the same as your DH, sadly mine isn’t here anymore, but he had it right and DD is ploughing her furrow very happily and successfully, just needing from me a cheerleading boost every now and again and just a making sure they are ok, I was like you

Mydcchangedmyusername · 01/06/2023 22:15

Techno56 · 01/06/2023 21:24

The thing that has helped my son the most (in my opinion, as he wouldn't know what to say if I asked) is make her life as manageable as you can, because being autistic is very very tiring and overwhelming in various ways with the way our world (and school) is.

For my son this looks like ...more help and more slack given with house chores, organising himself, social expectations/obligations, letting him eat what he feels comfort with, not forcing him to "do things" all the time (school is hard enough). He is 15 and I often drive him to school even though he can get the bus. Or I pick him up from the bus stop when he could walk. I help him with his homework even though he could do it alone. I reduce pressure wherever I can so that he has the capacity to manage pressure that I can't control.

It looks like pandering or helicopter parenting or spoiling probably, but it's not, it keeps him mentally well and allows him to focus on the stuff I can't do for him.

I realise this is all a lot less relevant for a little one, but if you keep it in mind it will still help at various stages of development.

Also, let her stim and fidget if she needs to without telling her off. I didn't know my son was autistic until he was 9 and I deeply regret the things I told him off for or showed frustration over when he was little.

As an autistic mum of autistic teen dc, I second this. Very similar to what we do. I'm very mindful of mental wellbeing.

thisisasurvivor · 01/06/2023 23:01

I'm sending you lots and lots of good wishes op

Sounds like her school is lovely too

You will always be her champion xxxxxx

TooBusyGazingAtStarss · 02/06/2023 06:10

Thank you for starting this thread. My DS is nearly 2 and is on the waiting list to be assessed for ASD.

The waiting list is so long and it feels like an eternity. He was referred back in January time and so far has had one hearing test that said he can't really hear and has glue ear in both ears and i just have to wait.. even went for a private appointment with ENT specialist which tbh was a waste of money as he basically made us wait for next hearing test on NHS..

All of the posts are massively helping.

JeandeServiette · 02/06/2023 06:16

She'll be absolutely fine.

MissHavershamReturns · 02/06/2023 06:21

My ds was speech delayed and struggled socially a lot as a toddler and in nursery and reception.

Just finishing mainstream primary this year, has friends, does Scouting and doing well with schoolwork. Going to mainstream secondary.

It’s very hard to process the dx so give yourself time. Remember anything a dr says about dd is their medical opinion but many Autistic children have huge potential for development.

MissHavershamReturns · 02/06/2023 06:22

Techno56 · 01/06/2023 21:24

The thing that has helped my son the most (in my opinion, as he wouldn't know what to say if I asked) is make her life as manageable as you can, because being autistic is very very tiring and overwhelming in various ways with the way our world (and school) is.

For my son this looks like ...more help and more slack given with house chores, organising himself, social expectations/obligations, letting him eat what he feels comfort with, not forcing him to "do things" all the time (school is hard enough). He is 15 and I often drive him to school even though he can get the bus. Or I pick him up from the bus stop when he could walk. I help him with his homework even though he could do it alone. I reduce pressure wherever I can so that he has the capacity to manage pressure that I can't control.

It looks like pandering or helicopter parenting or spoiling probably, but it's not, it keeps him mentally well and allows him to focus on the stuff I can't do for him.

I realise this is all a lot less relevant for a little one, but if you keep it in mind it will still help at various stages of development.

Also, let her stim and fidget if she needs to without telling her off. I didn't know my son was autistic until he was 9 and I deeply regret the things I told him off for or showed frustration over when he was little.

I also take this approach and find it really helps ds.

MissHavershamReturns · 02/06/2023 06:24

Op I would really recommend reaching out to the charity ICan on the speech side if you haven’t already. You can book a call to speak to their marvellous speech therapist John. He is incredibly kind and knowledgeable.

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