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

[Worriedmun]

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

Posted too soon!

We had six months of school refusal while her medication was stabilised (ADHD meds as she has a dual diagnosis).

She's now up to three days a week; can't go to most classes due to her anxiety but she is in the pupil support base, and in my eyes that's a huge win for now.

Just think, if you help your son understand himself now, all the years of self loathing and struggle you’ll be saving him.

This, exactly, OP - you've done him a huge favour getting him assessed in his teens as opposed to letting him struggle undiagnosed into adulthood feeling there must be something wrong with him.

My 3 were each diagnosed as they hit puberty and I was diagnosed in my 40s this year. My NHS support group (I know!!) for newly diagnosed adults is full of people coming to terms with their diagnosis and one of them said the other day "I dislike myself a little less each day now" which sums up how I feel about my diagnosis too. So you've saved your DS a great deal of confusion and heartache and unnecessary self-esteem issues by giving him an explanation for some of his struggles.

My eldest DD was terrified of people finding out she was autistic for literally years after her diagnosis, but she is now in her 20s and openly talks about it and is far more comfortable with it. It took years, though, and I think it helped for her to see how addressing her needs actually benefitted her and made her life much easier before she got comfortable with it.

I think with telling DS about the diagnosis, a helpful way to frame it might be to explain that lots of people have autistic traits, and that the criteria for a diagnosis is based on how much those traits cause difficulties with daily life compared to someone without those traits, since the world is designed by people without those traits who had no idea that other people might struggle.

So while the diagnosis might seem irrelevant or unnecessary or even unfair to DS now, there might be times in the future where he might benefit from being able to understand how he thinks slightly differently from how others do, or where autism can often be a useful shorthand for explaining a whole range of traits to someone to help make his life in school, work or leisure activities a bit less stressful.

And he doesn't have to "come out" to people in any big way. I haven't even told many people about my diagnosis unless it's relevant or I want to - he can just take his time to learn what it means for him and acknowledge it or ignore it as he feels comfortable.

Also have a look at the Ambitious Autism website, lots of useful info for parents and teens and perhaps watch the Chris Packhan series on iPlayer that shows there isn't just one stereotypical type of autism, that it can impact people in lots of different ways.

The headphones can be used for sports - shooting etc. But my DDjust walks around the house in hers to block out her brother!

Thank you for all of your thoughtful input. I’m away now for a few days so will read properly later tonight when I have some quiet time. We had his assessment report back today and it said that there are strong indications that he also has ADHD and has been referred for an assessment. He also has had contamination ocd for a few years since covid, he really has inherited a bum deal ☹️
They have given us 2 days to provide feedback to the report but I have asked for more time as I need to digest when am back home.

@JustGotToKeepOnKeepingOn sorry to hear about your experience. DS is currently away for a few days and we will tell him when he gets back, feel physically sick. Could I ask what course you are doing, need all the help I can get :(

I appreciate it’s a shock but if your projecting negativity & a stressie vibe your amazing young person will pick up on that. Switching the narrative around to focusing on their strengths, what are they good at, and then looking at the things they find harder & look together at how you can help support them. I grew up with no idea why I felt different or struggled with stuff, I still ended up getting a degree (just a bit later in life), I have a good job and a family. Only in my 40s did the penny drop that I was neurodiverse, and my DD was diagnosed as autistic aged 10, despite everyone around her telling me no she wasn’t! But I could see it reflected back to me. Yes it makes it tricker to navigate but there’s a path for everyone it just maybe more wiggly. Ironically where I work we have an employee group for ND people with over 1000 members it’s very prevalent in science/medical careers to “think differently or use your hyper focus”. So please don’t be scared/negative but find positive pathways. I often point people out in TV and say in conversation they are autistic or have ADHD to my DD, we have books with autistic characters and just incorporate it into our lives.

What a great post @SummerCycling322

There doesn’t need to be any weeping, sadness or anger. You don’t even have to twist it into a positive. Like I said in an earlier post - aim for neutrality.

I also like to talk about famous and successful people who are autistic. I like to laugh about it too. If my daughter is infodumping at length about Minecraft, or being incredibly literal, I point it out and we laugh about it. It’s the little things like that that make me glad that she has a diagnosis and understands what it means.

Thanks @Jellycats4life aiming for neutrality is a good way of putting it. I appreciate my DD was younger but I was very matter of fact about it, chatting about the things she was struggling with her friends or life and just validating her feelings but also saying it’s just the way your mind works and other peoples minds may work in a different way. Nothing right or wrong about it just the way it is.

I have a dear friend who is an adventure scout leader with young people aged 14-18 and she said that easily half are ND kids, it doesn’t stop them doing anything. They do all sorts of random and amazing things, including overseas trips.

I think one of the challenges of being diagnosed in your teens is that you then have to dismantle old ideas about yourself and incorporate new ones... and this can take time, even a few years. Give yourself and him plenty of time to process it all. I would be pretty neutral too, as actually this is his diagnosis not yours and he needs to come to terms with that and, later on, see why it is useful in terms of understanding himself better, his strengths and his weaknesses and also to learn to protect himself from possible burnout.

I agree about not making it into some sort of tragedy.

My DD is profoundly uninterested in her diagnosis! Now whether there's a wee bit of denial in there remains to be seen, but she wants to be and very much is also just your average teen, with the ups and downs that that entails.

I have to admit to being a bit mystified by how you got to a diagnosis without having a lot of very explicit conversations with him in the first place. He seems more than old enough to be open about his health with.

Mine is also very disinterested in her diagnosis! (Recently diagnosed age 9, but we've 'known' since she was 3). She said 'so what?!'. But we have been drip feeding books etc for a while so I don't think it was a shock. She's quite uninterested in what others think of her anyway.

Just to add to the chorus of advice, one of the other things it's helped with is being kinder to myself as a parent- so I stopped thinking that if I was just a better parent she would play properly, or chat with me or, or. Now my job is to advocate for her how she is.

And my DBro sent his congratulations on diagnosis- he also has an autistic child but later diagnosed which has caused its own issues. Much better to know.

I do worry about the future- I think she will always need some extra support organizing herself- but she has some great talents and like your son, will find her niche.

@Worriedmun I'm doing a Level 2 Understanding Autism course. Only just started it, the first module is about the people who first identified/diagnosed autism. I'm hoping it's going to get better!

It takes a good while to settle. But my son who was in an inclusion unit in primary with only an hour in mainstream year 6 a day ( ASD and ADHD) has just got all 8/9 grades GCSEs full time in mainstream . All help has been at school so really get to know your senco and identify the positive relationships and the difficult parts of days. Things change all the time, little things like being able to go to library at lunch, take 5 mins out of less ions and a safe space to go plus understanding himself.
PM me if I can help at all

Thank you for these wise words, I must say that I am feeling so grateful to those who have replied, it’s been a real source of strength to read the helpful comments and advice, so much that I have produced a word document with a lot of the advice which I will refer to over the coming months.
I know that it wasnt great that we did not tell DS that he was going to be assessed but based on past experience he would have not attended and absconded that day which would have been terrible especially as we’ve waited years for the CAHMS referral and we really wanted it for the start of term so we could share with his teachers and SENCO so he can have support put in place - this is his GCSE year. Whilst he is old enough, he is not mature and has repelled against any indication that he may not be ‘normal’ despite us using different conversations and approaches. He is back from camping this weekend so now will be a good time to talk to him and his siblings are at grandparents.
The idea of being neutral is a good one to adopt, thank you.

Only just realised my typo in my username, suspect ‘mum’ was taken a long time ago ☺️

Don’t beat yourself up about any of it - sounds like you did what you needed to get him there and that’s the important thing. It can all be more positive now you know and can move forward.

Mine was diagnosed at 12 but we suspected long before but kept thinking it’s fine as he can cope. Seeing the difference in our lives now, I’m a huge advocate for diagnosis and just reviewing your own expectations. We still have challenges but talking openly about why they are suffering really helps my child get through.

I personally framed it all as a huge positive. Knowing yourself, being able to get “perks” at school as support etc. I also used the story of a family friend who was diagnosed as dyslexic in his 40s who every day regrets not finding out sooner. These stories are everywhere - never heard of anyone regretting a diagnosis.

Agree with the other posters, definitely speak to the SENCO and share the report. The adjustments my child gets at their school really helps them day to day. But be prepared to get pushy though as they will need to apply for exam adjustments soon and there’s a lot of evidence to gather first so they need to do that asap. It’s a good thing that he has you as his advocate here.

You asked a question about loud noises and coping now. My reflection is that it could be that it doesn’t hurt as instantly now but the continual pressure from sensory uncomfortableness builds up until an explosion. Your thresholds are higher as you get older so might seem like you don’t mind anymore but it’s building up in the background.

Another thing to be aware of that I didn’t quite register until diagnosis is that the autistic stereotype of avoiding sensory stuff (e.g. not liking to be touched etc) doesn’t apply to everyone. Plenty of people are sensory seekers and like more sensory input rather than less! One of the reasons we didn’t think our child could be autistic when we considered it younger was that they liked hugs a lot and we naively thought that meant they couldn’t be autistic after all!

I recommend googling sensory processing disorder. And if you can push for an Occupational Therapy assessment do it. That’s been a huge help to us.

This is a very helpful thread for me. We are going through a similar process of adjusting to my DDs recent diagnosis. My thoughts are a bit of a mix of "so what" and "what now".
Telling DD went well for us fortunately. I think she was a little bit annoyed but she took it on board. It was made a bit easier because DH (having been a nightmare and quite hostile about getting the assessment) has really stepped up and so it was a calm and positive conversation. We didn't come across overly negative about autism or too dismissive so I feel it was just right. We told DD that probably more than one of us in the family are ND but that she is the first one to be diagnosed. Not too many conversations with DD since then (about a month ago) but I am raising it from time to time when relevant and trying to help her understand what autism means for her and how it affects her.

Update, finally told him tonight. He took it badly as expected and shouted and slammed his hands on his desk and kicked the door but has asked for a copy of the report and is now quiet so am leaving him to think about it and come to me when he wants to talk.
School have been really good and HoY has emailed all his teachers to inform them of diagnosis and sensitivity about DS not wanting anyone to know. SENCO have arranged a meeting to discuss adjustments.
Glad it’s done, and hoping he comes to accept it in time. Was up at 6am this morning worrying about how to tell him so very tired now.
Back to school has been okay, although school has RAAC and half the school closed so lessons and normal arrangements have been disrupted but he seems okay with it.

Well done OP. Must be a weight off your shoulders to have told him. It doesn't sound as bad as you feared if he's looking at the report and presumably digesting the news.

Really glad school is being supportive. That's so important.

Onwards and upwards x

Thank you @NameChange30. He’s playing on his Play Station now so I won’t give him the CAHMS report tonight (it’s absolutely HUGE), think let him take the news in first and then drop feed the report and other chats led by him. Relived as not been sleeping for weeks with worry, onwards and upwards is a good motto, I’m naturally an optimist but it’s been severely stretched by this. 😞

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 know you are trying to be thoughtful but you should have told him - he is 15 and old enough to decide if he wanted the assessment,

Just seen that you have now told him but I would in your shoes have told him upfront. He would probably have guessed anyway as he sounds an intelligent lad.

@ruby1957 thanks for your thoughts, but taking the approach that we know our son best and we know from past experience that he would definitely not have attended the assessment and he (and we) desperately need it, not least because he can benefit from discreet adjustments at school this year which might help him come out with at least a few GCSEs, keeping the door open for options in the future.
if we had asked him, he would have refused, and he would have to carry on wondering why he finds things challenging for years, now he will be able to understand why he finds some things hard. Got lots of helpful and thoughtful guidance on here that helped me tell him tonight in a measured and reasoned way.

Unfortunately he’s not that intelligent, he didn’t even ask why we went to the assessment!