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Feeling emotional, DS diagnosed with autism today, what next?

84 replies

Worriedmun · 28/08/2023 19:47

DS is 15 and had an autism assessment a few weeks ago. We had a call today (a bank holiday!) from the assessor who was instructed by CAHMS. He confirmed that DS meets the criteria for autism and also has traits of AHHD which he will be assessed for.
Although I was expecting this outcome, I feel very emotional this evening and worried about my DSs future and also beating myself up that we didn’t click earlier that something was different with him compared to his siblings and friends. I’m having to hide away from my other DC as keep crying, luckily my DS is away camping so we have some time to digest this news whilst he is away.
The assessor is going to email through a written report and that’s where their involvement apparently ends.
Not clear what our next steps should be, we are out of our depth.
The problem is that he is adamant that he is normal and not ‘special’ (his words, I apologise). We didn’t tell him that his assessment was for autism as he would not have attended in a million years, we said that it was for us to be better parents and help him when he has difficulties.
i wonder whether we speak to the school as he did terribly at school last year and it’s his GCSE year this year and will need some support - if he accepts it.
Do we go back to CAHMS and ask for support? And what support?
It feels a very lonely place to be and feels like the whole world has perfect fully functioning children, although I know really that isn’t true. It would be hugely helpful to hear any wisdom from those parents who have been through this.
many thanks in advance

OP posts:
Cognitivedisonance · 28/08/2023 21:30

OP. Just to add a different perspective…
I struggled immensely throughout school both primary and senior and was always in trouble. Back then, it involved being placed alone in the corridor to work, where I behaved myself mostly and I was very capable but couldn’t cope in the classroom. But nothing was ever done to help me and I properly went off the rails and just stopped attending school. At exam time I crammed and got really good passes, but I continued to behave like an absolute wrong-un for years and had all kinds of social and emotional issues. When my sister , my brother and my son all received diagnosis for ADHD/ASD the penny dropped and I realised I had been struggling with it all my life. When I accepted it and started forgiving my quirks and living within my own emotional and social boundaries things improved for me. I’m just beginning my PhD now and I’m holding my own as a parent. I’m extremely introverted and non social but I’m so happy with my little world since I reinvented it with this knowledge. Just think, if you help your son understand himself now, all the years of self loathing and struggle you’ll be saving him.

Eliza121 · 28/08/2023 21:36

OP, my DS is 13 and his diagnosis is not far off. I feel happy in that progress is being made and soon we will have an official diagnosis so it will be easier to get help, but also desperately sad about it all. Sending lots of love

Worriedmun · 28/08/2023 21:38

@Cognitivedisonance thank you for sharing your story and so lovely to hear that you’ve created your happy place and are doing well with your phd and parenting.
Maybe rather than beating myself up that we didn’t click for years that my DS is autistic (he was our first born), I should perhaps be grateful that we did at least click now, before his GCSEs, and we can do things to help him now before he reaches full adulthood. Thank you for making me recognise this.

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Worriedmun · 28/08/2023 21:40

@Eliza121 thank you for your kind words and sharing that you also feel sad. Not sure I can fully articulate why I am feeling sad, but just am ☹️

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Destiny123 · 28/08/2023 21:41

Please don't write off his future/career just cos of a label he isn't any different to who he was yesterday. I'm in a group of 500 autistic drs there's no need to put career limitations on a label. It's one of the reasons I speak at a local schools session called breaking glass ceilings to try to prevent that pathway occurring post diagnosis.

Look to charities I volunteer with the ymca mentoring an autistic teen, have done similar at uni via the children's society where they fund a budget of £10 a week to do activities the child enjoys

These are just a few things I've recently sent the kids mum I mentor so no link between them

https://www.digitalspy.com/tv/a43451800/a-kind-of-spark-bbc-review-autism/

https://www.bbc.co.uk/programmes/p0bbnjvx

https://www.flareaudio.com/products/calmer-kids-secure these are the kids version of loop earplugs which are great at reducing noise overwhelm

https://sethperler.com/

Fidget pens/necklaces/keyrings

Autism isn't a deficit. It's a different way of thinking and experiencing the world. We are passionate about trying to get rid of the negative stereotypes and improve experiences

BBC's A Kind of Spark is groundbreaking in its portrayal of autistic women

"We're here and we've always been here."

https://www.digitalspy.com/tv/a43451800/a-kind-of-spark-bbc-review-autism

Jellycats4life · 28/08/2023 21:42

When my sister , my brother and my son all received diagnosis for ADHD/ASD the penny dropped and I realised I had been struggling with it all my life. When I accepted it and started forgiving my quirks and living within my own emotional and social boundaries things improved for me

I could have written this, except it was my daughter and son getting diagnosed.

Everyone talks about diagnosis being pointless unless a child is struggling at school, but in reality, it’s so wide-reaching. I’ve been able to reframe my entire life, forgiving myself for all my quirks and all the things I’m terrible at.

SummerCycling322 · 28/08/2023 21:52

Echo checking out Dr Naomi Fishers short talks and Facebook page or blogs she talks a lot of sense. My DD was 11 when diagnosed but I already ‘knew’. Definitely push the school to put “reasonable adjustments” in place the list above mentioned my DD has at secondary. As your DS is 15yr maybe approaching it from the direction of talking about the things he finds harder and what in an ideal world make them easier build on those things. I too work somewhere that has a higher than average percentage of ND folk, with the right support he can still achieve what he wants to he just may take a more wiggly path to get there.

Chocolatebuttonanyone · 28/08/2023 21:54

My DD was diagnosed at 13. She had always held herself a little separate to other children and likes the company of adults.
Secondary school was the instigator for seeking a potential diagnosis but when I talked with her about it she had an assembly at school about autism and said she thought it sounded like her.
It has been so helpful for us. I am far far more patient of her quirks. Need for headphones as someone has mentioned PP.
And give her more time to process stuff than i did before. She just cannot be hurried.

SummerCycling322 · 28/08/2023 21:55

I also agree with the above comment as definitely my dad, my brother, my DH and myself are all ND (none of us officially diagnosed) and all ended up in stereotypical careers for minds that work in that way - analytical or computing! And have hobbies that are more obscure.

SummerCycling322 · 28/08/2023 22:02

This table of expressions I found really useful it was shared by Naomi Fisher along with parenting tips from PDAsociety.org.uk help us communicate better with our DD.

Feeling emotional, DS diagnosed with autism today, what next?
Worriedmun · 28/08/2023 22:02

@Chocolatebuttonanyone sorry for being really stupid but what are noise cancelling headphones used for apart from the obvious. My DS used to hate loud noises when he was little but it doesn’t seem to bother him nowadays. Would they help him keep calm and distract him?

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SummerCycling322 · 28/08/2023 22:08

My DD uses earbuds to help transition between activites especially leaving the house. She plays audiobooks from the library or music or podcasts. They block noise but also give her mind something to focus on rather than the transition that is needed. Been a game changer for managing her anxiety when just leaving the house.

Starlightstarbright2 · 28/08/2023 22:09

My Ds was assessed at the beginning of year 8 it probably took a year for diagnosis due to lockdown … I had already been told he scored for Asd .

I would say expect a whole mix of emotions . I think there is a relief but also a realisation this isn’t something he will grow out of .

i definitely see more Asd in my Ds since diagnosis but I think I would just put it down to his quirks for want of a better term so probably manage things better.

Honestly I think there is so little support out there for parents of children with Asd however I think other parents in your situation are your lifeline .

I would also definitely mention to Senco - it does open doors - discuss the hw issue - my Ds was able to go to a hw club . Look at what your child is finding challenging at school.

Also tell your Ds sooner rather than later. There will never be a good time . I think for my Ds it has helped him understand himself . He would have been more cross if I held that from him .

Cognitivedisonance · 28/08/2023 22:16

@Jellycats4life
Yep! It’s well documented that girls are under diagnosed aswell because we don’t present so clearly. I was bullied awfully by teachers because I presented as being obnoxious and stuck up, when in reality I was fighting for my life not to burst into tears or kick a window through to escape.
My sons first feedback sheet at nursery at 14 months read ‘prefers to play alone’ then at 2 years ‘still non verbal ‘ at 5 he was doing maths to an advanced standard but still couldn’t hold a conversation and it was so bloody obvious!

so many kids don’t display this obviously though and hence the late diagnosis. I was sat there just being weird and disliked and chronically anxious till adulthood.
Still, we know now.

Worriedmun · 28/08/2023 22:22

Thank you to everyone who has posted on this thread, I feel a little less emotional and calmer after reading all of the helpful advice and experiences and am grateful. There are a number of actions I need to take and will try to be kind to myself and him. I wish my DS was here tonight so I could give him a big hug but hopefully he is having fun camping and pleased that he is able to do that with all the thoughts he must have racing through his head.

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Jellycats4life · 28/08/2023 23:23

It’ll be OK @Worriedmun 💐

Have a look at books by Dr Luke Beardon - cheaper on Kindle than paperback! He’s written extensively on autism in kids, adults and particularly about anxiety.

JustGotToKeepOnKeepingOn · 29/08/2023 08:20

My DD14 is an only child and I'm a single mum. I'm not going to lie to you OP, going through the diagnosis process has been awful. I didn't tell her for weeks as I wanted to make sure I wasn't going to break down when I told her.

Her reaction to her ASD diagnosis was far worse than I could ever have imagined. She was devastated. She howled. I've never heard the noise she made before or since. She was in complete shock and refused point blank to accept the diagnosis. It was very distressing for us both.

She has now accepted the diagnosis but refuses to go for counselling to help her with her anxiety. School are aware but as with every school the support is hit and miss. They are so stretched with the number of students they have to support that they concentrate on children with more complex needs.

I'm finding it very difficult. I don't know what to do for the best for her. She doesn't want help she just wants to be left alone which puts a lot of pressure on me to keep her on an even keel. I'm exhausted. I don't think she realises how much I have to think ahead all the time.

I find it hard to know what's ASD and what's teenager behaviour. I'm very worried about her future. I don't know how she will be able to hold down a job. Her natural reaction is to either go mute or bolt if she's stressed which isn't going to work in a work environment.

I'm doing a course to try and understand more about ASD but I hate it all and wish we weren't in this situation. There's a long road ahead of us.

TheOutlaws · 29/08/2023 08:39

Hi @Worriedmun, I hope you’re feeling okay this morning.

DS1 (nearly 11) was diagnosed with ASD/ADHD about 3 years ago. Medication (for the ADHD) in school has been life-changing for him; might this be something you’d consider should he get an ADHD diagnosis?

I wonder if it might be helpful for you to think about other members of your family who are perhaps (undiagnosed) autistic? You mention that you didn’t really notice DS’s ASD behaviours in the early years; perhaps this is due to it being your ‘normal’? This was certainly the case in my family.

Good luck, sending lots of love and support.

Worriedmun · 29/08/2023 08:59

Good morning, feeling a bit bruised and battered emotionally today and have a long drive ahead of me as taking the other siblings away for a few days. Feel quite sick.
@TheOutlaws me and DH have started to think one of the younger siblings (a girl) is also displaying ASD traits (hates change, restricted food likes, although she is popular at school and has lots of friends) and think I may refer her for an assessment as it will take a few years anyway in all likelihood (we cannot afford private assessment). I do remember feeling quite different at school and awkward in groups of girls, and never really get sarcasm, but not sure if I have asd, I don’t feel like I do and am fully functioning although I guess you never know.

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TheOutlaws · 29/08/2023 09:03

@Worriedmun

I felt the same, it is an exhausting process and takes a few days (and longer) to come out of the other side. Once you’ve had a chat with DS, you can all start to process things together. My DS1 is in denial about his ASD diagnosis (although happily takes meds for ADHD). I think it will be trickier for him in teen years, although he’s currently got a good group of friends to support him.

Worriedmun · 29/08/2023 09:04

@JustGotToKeepOnKeepingOn am so sorry to hear about your experience, I strongly suspect our experience will be similar if not worse as DS likes to think he has street cred (he dresses like a gansta 🙈) and is very conscious about others see him. We tried to get him some support through school a few years ago and he went nuts when someone tried to collect him from his class, he refused to go. Acupuncture worked bizarrely although he hates needles, it was less intense and he could speak when he wanted to. CBT was a waste of time as he just grunted and refused to engage. Dreading the next few months, also have to cram in work, his siblings and all the other life jobs ☹️

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Singleandproud · 29/08/2023 09:45

It doesn't help that many student use 'autistic' and 'downie' in the same insulting way that 'retard' and 'spastic' were used years ago. If he's running with a rougher crowd then it may well be that this plays into his internalised ableism. Be very aware that autistic children who crave the approval of their peers have been known to be targeted by County lines as they are vulnerable. I don't want to add another stressor to your situation but keep an eye on his behaviour and what he brings home, any new tech or money he comes into randomly.

Elephantplant · 29/08/2023 09:50

I've been teaching a long time, and over that time have seen an explosion in the diagnosis of nd children. In that respect, I've found it easier to deal with ds, even though he doesn't yet have a dx. However, it also meant that I possibly waited too long to get the ball rolling, because after ever send course, I tend to come home and diagnose my family, so i ignored the glaring signs. Except, in this case, the more I've learned about asd and adhd and add, the more I started to think ds did actually hit them.

If it's any comfort, most kids with a dx are usually pretty accepting of it. There will some who refuse any modifications or extra attention, but the vast majority are relieved that they don't have to struggle as much, although obviously, they present in a whole range of ways.

I have thought about my own childhood and hpw it took me a while to work out how to interact in a 'normal' way and various other things. I also discovered (on another course!), that what my mum called 'pulling those faces' is actually a tic. I had only ever thought of verbal tics, but I have physical one (my face kind of quirks up or I need to open my eyes really wide for a second) and an aspirated one, where I have to do a sort of breathing pattern. As an adult, I can control them around people, but then tic like mad when I'm alone.

Thinking about the tic and the release it brings me has made me more empathetic to when ds has, yet again, done something unfathomable and doesn't know why. I try and try to help him to understand, but ultimately, I'm just a teacher with some knowledge (and his mum), so I think he'll listen more to a professional.

Newbz · 29/08/2023 09:54

just remember that having a diagnosis doesn’t mean he is any different from the child you had yesterday - it’s just a ticket to access support to help him have a better life than he did without. And no one needs to know he has a diagnosis unless you want them to. I know the ‘label’ seems huge, but nothing has changed.

NotMadeOfStone · 29/08/2023 10:02

I'm just quietly reading this thread.

DD13 was diagnosed earlier this year after having a total breakdown - triggered by moving to high school.

PPs are right that there's really no help - the change you make is in your own home and your own parenting.

I'm not really one for 'you don't have to put your clothes away if you don't fancy it' - I think it's important to still maintain the normal household order, and that is what life will demand of her.

I do give her more space though, and am now used to not seeing her all evening then her jumping into my bed for a chat at midnight...