My son was diagnosed with ASD 3 hours ago.

[Rainys]

Hello. Basically that.
My son is 5 and was diagnosed with ASD today.
I hadn't realised a diagnosis is given there and then so I'm feeling shocked. I should have read up on what to expect.
I didn't see this coming.

How could I have got his behaviour and needs so wrong?
Not even sure why I am posting or what I am asking.
Thanks for reading. X

Give yourself time to process this, it has obviously come as a huge shock. Treat it like any other situation in life where you feel the rug has been pulled out from under your feet. It will be okay, it's not a dire diagnosis, it's very helpful to know so early so that the right interventions can be put into place.

When you get the written reports, it will seem even worse because they only concentrate on the areas where your child needs help, so it will seem even more overwhelming and terribly negative. remind yourself it does not give the whole picture of your boy.

Keep remembering your lovely little boy is the same little boy he was yesterday, and he will be your lovely little boy tomorrow, the diagnosis has not changed him, it's only there to get him the help he needs.

This is a good explanation to start you off.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

It may be advisable for you to fully understand his diagnosis before telling family and friends as some can be far from supportive, usually based on not knowing anything about ASD but having a negative opinion anyway.

In time, you can look and see if any other family members are neurodiverse. It's common for at least one parent to be, and they often don't see the signs because the autistic behaviour is just ordinary to them.

For now, just take each day as it comes and allow yourself to process all the new information.

Congratulations to your son and for you. I would highly recommend joining the group "Autism Inclusivity" on facebook, it's a group designed for parents of autistic children to ask autistic adults about autism, get tips, etc (I'm an autistic adult)

I'm so sorry, I know it can be a shock especially if you aren't expecting it (I wasn't). And if it's anything like my experience they give you next to no information. So you are left with more questions than answers and just doubting your judgement and worried for your child. It's shit but certainly for me it got so much better as I learned more, and we're in a very happy place now.

Remember that often autistic children come from families with a lot of autistic traits - so they may do very well at home and seem completely happy and relaxed in the family unit. Certainly that was true for us and I think why it was such a shock for me to hear it. So it's no reflection on your judgement or parenting if you didn't see it. Autism is also a very different and more broad/diverse thing than most of us understand before we are plunged into this world.

If you want to start to learn more, I'd recommend starting with the "Nurturing Neurodiversity" YouTube channel, or Jessie Hewitson's book, "How to Raise a Happy Autistic Child". They are both really good and practical and non-scary. The website "Autistic Not Weird" by Chris Bonnello is also excellent.

What are your concerns about your son - are there any areas where you feel he needs support? We might be able to help you figure out where to go on those, when you're ready to share.

Thank you so much, people in my phone.
Everyone of your replies has helped me.
I will certainly read the links etc.
I need to really digest everything but my biggest fear at the moment is his struggle to build friendships. I’m sat here in tears, nothing has changed in my gorgeous little boy. I think I’m probably scared of the unknown or what happens now? Xx

It is quite a shock at first. My DH was in tears when ds was diagnosed age 4 even though it was evident he was on the spectrum from much earlier. It can be a kind of grief in a way, for the future you wanted your child to have. It is important to allow yourself to feel the emotions and not feel that they are wrong or you shouldn't have them.

The positives are with a diagnosis it is far easier to get support and interventions to enable your son to gain social skills and build friendships. My son has an EHCP now and does small group work to build the skills he will need to relate to others. My son was non verbal age 3, he can now communicate in full sentences with others and is building friendships with his peers. Children with ASD still grow, develop, change and learn new skills. How your son is now is not necessarily how he will be in a year, two or five years time.

I wish someone had told me to have hope at the beginning of our journey after diagnosis as the professionals seemed to focus on the worst case scenario and were not very positive. Your boy is as you say gorgeous just as he is and has you to love him and help him. That is the most important thing.

Thank you and yes. I was sat all alone as only one parent was allowed in. I was listening to everything, thinking that some of that sounds true then the Dr suddenly announced it, mid sentence. Cold and clinical. I’ve now been given a sheet of contact websites and sent on my way.
I can’t stop crying, more due to the fact that I didn’t see it. X

Sometimes it can be hard to spot when it’s your first child and if you’re not used to young children. As PP have said, sometimes we see these traits in ourselves and think they are typical when they might not be.

Give yourself time to process it. Even if you are expecting it, as we were, it still comes as a blow. Not because we don’t love our children as they are, but because we don’t want them to struggle and we automatically jump ahead and fear the worst, things that perhaps will not happen.

Take some time and then do some reading and make a plan. If he doesn’t yet have an EHCP then apply for one. Is it school who pushed for the assessment?

It was his consultant who first referred, almost 3 years ago. We’ve applied for an ECHP twice. Once in nursery but got rejected due to paperwork missing. Once from the school but got rejected due to lack of evidence from services (which had all been cancelled due to Covid). The Senco is amazing and very much doubts he’ll qualify for an ECHP as the school can meet his needs. X

I am putting my arms around you and giving you a hug.

Just give yourself some time. It is a hard thing to process. IME I coped by remembering that I would never change my DS for any other child as he was my perfect little boy, just as he was. But he was diagnosed now 8 years ago and it has been very hard often, very funny sometimes, heartbreaking sometimes and just regular life usually.

I would join the National Autistic society- and start slowly learning at a pace you feel comfy with.

I agree that the hard clinical approach can be shocking. We had a further full assessment last december and the psych told us on the phone that he had a very low IQ and was cognitively challenged. My stoic DH (who has largely been in denial for the past 8 years) just sobbed his heart out. The psych said 'Oh sorry, I should have broken that news more gently and in person... '

if it helps, know that your child is exactly the same today as he was yesterday. But now you know more and now you can go forth into a new world with knowledge and armed and ready to what you can for him.

Thank you so much for the virtual hug. Greatly appreciated. Is it normal to go through a process of denial? I’ve been awake thinking of everything that was said yesterday and thinking of a reason why.
For example, they said he was shy going into the room (that’s because he’s not used to seeing new people and was quite isolated during lockdown). They said he wanted to play with the plane more than the cars, he flicked the dolls eyes before playing with her (no doll at home) etc.
My son asked them questions but it wasn’t continuous (he’s got a speech delay).
He’s had no access to speech therapy since Covid.
The Dr kept referring back to an original observation which was 3 years ago. I also felt the questions I was being asked were very leading.
Is my denial to be expected? Is this the reason I didn’t see things coming I wonder?
They said he’s a lovely little boy with a great personality. That’s my little man & I wouldn’t change him for anything.
It’s me who is struggling. I had to relay everything back to my husband as only one parent was allowed in which was also very hard as he’s in denial too. Xx

I'm quite possibly going to be in the same place on Monday with DD2 OP - so I feel for you.

I found quite early on when we were beginning to unpick DD2's difficulties (speech, higher level language, dyspraxia and now we think ASD and sensory issues) that every single report would whack me for six and I'd need to give myself time to sit and wallow and sort it out in my head. It's natural and it's really under appreciated by professionals just how much it takes to process it yourself as a parent.

As DD's got older I've become better at compartmentalising - "this is a report I've just received - but this is exactly the same child I had at 7am this morning when I had to crowbar her out of bed" (DD2 is like 95% sloth). My mum still hasn't mastered this and was in tears when we got a huge long (private) SLT report recently laying out her social communication difficulties and issues with higher level language processing - I was fine with it, but it pretty much confirmed my own observations on that one (I'm a final year SALT student so had a fair feel for it).

I'm also in the middle of waiting for an ASD assessment myself - but because of how I scored on the screeners for it (I'm trying to queue jump a bit going via university) the university are fully happy to support me as if the diagnosis is confirmed - and I still get a bit of a jolt seeing and hearing myself described as autistic. It'll come in time I think - took me a good while to accept seeing myself as dyslexic too when that was diagnosed.

The nature of the questions can feel very leading - I felt that myself when we were doing the parental questions bit of the assessment for DD2. They just need to get very very specific responses to score what they're looking for - I was prepared for this, knew basically what they were going to be asking about - but I still really felt quite verbally battered at the end of it, and apparently, according to the psych who was doing that element of things - I was more precise and gave them the information they needed than most parents they saw!

Thanks so much for your detailed response and all the best for next week.

I think you’re absolutely right when you say how hard it is to process it as a parent. When I was sat all alone, crying at the shock, it was the SALT who showed me the most kindness and gave me a tissue etc.
I do feel battered by everything. Applying for 2 ECHPs and having them rejected, has also taken its toll. On one hand, I’m hearing how my son struggles etc and then on the other, I’m told he won’t get an ECHP as he can cope with the support the school already has in place?!? 😢

I know it's easy to say, but try not to get too hung up on the diagnosis. You can choose to share it, or not, on a need to know basis. What it will enable you to do is to, perhaps, look at things with new eyes and investigate different approaches to use with your son that you may not otherwise have found. Your ds will present in his own unique way and this is what you need to focus on, not the umbrella diagnosis of autism.

The diagnosis will not have been given based solely on the answers to a couple of questions. These professionals are trained to spot behaviours that sit outside the typical ranges, behaviours that occur over a long period and have an impact on day to day life. Typical five year olds do vary in their personality and behaviours obviously, but there are certain things that they all do to a greater or lesser extent, such as imaginative play, seeking adults attention and approval, role playing the grown-up world, that sort of thing. Autistic children just engage slightly differently, or very differently, depending on the child and I think a professional is generally very good at spotting this.

The thing to remember is that there is absolutely nothing wrong with him. Being autistic is not being wired wrong - it's being wired differently. Because the world is set up for neurotypical brains, that can be disabling - but it's important to remember that DS's way of doing things is just fine, and you just need to teach him how the world works and help him figure out his place in it like any other child. Being autistic absolutely should not stop him making friends: but it may mean he makes them in a different way (e.g. through his interests and in smaller groups) rather than the more shallow and broad network of friends that other small children might have.

I was totally in denial because all the things that DD did that scored her high on the ADOS were perfectly logical. Wasn't it clever of her to notice that the air bubble in the toy bottle wasn't moving, so it couldn't actually be a drink? Didn't she spot some interesting things in the picture and describe them clearly to the assessor?

But eventually you realise that ADOS is not a test of logicality or intellectual ability or even whether you socialise in a "good" or "bad" way - it's looking for very particular types of social interactions and whether they are typical or not. Being autistic doesn't mean being asocial and certainly not antisocial - but again it does mean processing information differently and reacting differently, which can bring challenges in creating relationships in a neurotypical world.

So I don't reject DD's diagnosis any more (and might even look into one myself). But I do reject the pathologising language that was in some of her reports. And some of the assumptions that people might make about her because of her Dx. And I hope one day I won't need to do that any more, because the world will be not only accepting but welcoming of the fact that we all do things differently.

Hello OP, another virtual hug from me

I remember so vividly when my first child was diagnosed autistic. It hit me like a wrecking ball and I went through waves of different emotions for quite a while. I found it very very tiring. Battered is a good description.

When my second child was also diagnosed last year I thought I would respond differently, as it was me who pushed for her to be assessed. But that hit me hard too.

I've found the SN boards on MN a lifeline. I've had more help and support and understanding on here from people I've never met than ... pretty much anywhere!

Checking back in OP to see how you're doing - and let you know that, yep, we got the diagnosis expected today that DD2 has ASD and that we "really should look into ADHD".

Was chatting with one of my uni lecturers by email and she was amazed that my view on it was that "she's still the same little girl she was this morning really" - but she is, it just explains a bit more about how she sees the world differently. Also adds weight to me sitting on the waiting list for an assessment myself and quite possibly explains why I love working with ASD people - they just make BLOODY SENSE!!!

Yes they do!!! (We do??) I'm actually thinking of a career change myself to work in something relating to autism so it is lovely to hear you say that @CoffeeWithCheese!

Really hope you're doing OK OP. The shock is something else but you'll get through it and then the knowledge will be really valuable to you and DS. And there is absolutely no reason he can't have brilliant friends.

It's been a few days now. How are you feeling? Ultimately a diagnosis is the best thing with support etc. It doesn't change anything for your child and you really. But it is always a shock.

Ds is autistic. I was fully expecting his diagnosis for a long time and it was still upsetting and a shock getting the phone call. He was just 5 when diagnosed. His traits were very obvious though.

Aw. Thanks so much for your lovely messages everyone.

I think that I am beginning to get my head around things a little more. He's still my gorgeous, caring little boy.

I told his Occupational Therapist and she was generally surprised.

The thing that I am finding hard now is the fact that I have been handed a list of websites and that's it.

I have no idea what will happen next. Report will be about a month.
Just want to speak to someone but even the charities don't seem to have any help or advice line.

It's worth seeing if you have a local NAS organisation.
Also check Facebook to see if there are any more general parent groups for parents of children with special needs or disabilities (even if they're not autism specific, there'll be plenty of parents of autistic kids there).
Ask about the EarlyBird course: see if your local authority offers it. We had to wait ages in our area, but some places are faster, and it's a good way to meet other parents.
Are there any kind of coffee mornings at the centre you went to for Dx? It's sometimes also worth checking your Local Offer (Google your local authority name and "Local Offer") as that can sometimes list things like drop-ins, stay-and-play sessions for autistic or SN kids, coffee mornings for parents, etc.

Honestly we've found other local parents our best resource, and I've got a pretty good network now, but a lot of it is by word of mouth so you just need some way to find those groups and hook yourself in.

But yes, the information we got given with Dx was basically pointless. Just a bunch of leaflets, none of which really applied to our particular situation.

We did actually get invited on a one day course about 6 months later which was really good - but we needed that 18 months earlier (when we were first told DD was almost certainly autistic), not 6 months after Dx when I'd already boiled the internet several times over doing my own research.

Hi, mind if I join this thread please?

My DS has just been diagnosed, I got the phone call today and am just so gutted. I feel angry and sad and just want to scream. I know it's stupid but it just feels so unfair. Why my poor kid? Why me? So many people have multiple kids who are fine, I have just the one and now this. I don't think I can cope.

Big virtual hug to you too.
Yes, I totally hear you! I have those feelings and I have just one child too. I'm still struggling to come to terms with things and I'm a range of emotions at the moment.

However, I feel I've had more support through kindly strangers on this thread than anywhere else. And for that I'm so thankful.
Xxx

I've spent what feels like the whole of my son's early life, sitting on the outside (if that makes sense).
Even from when he was a small baby, things were hard. His speech was delayed making it hard for him to communicate. He was constantly on the go making any kind of toddler group that involved sitting still, an absolute nightmare.

He was laughed at due to his speech. He was the kid who wasn't invited to parties etc. He's had practically no support from any services over the last year due to Covid. I often sit and think 'why me? Why my little boy?' X

Thank you, it's good to hear that I'm not alone.
I feel wrong saying how I really feel, I know I should be saying, "I wouldn't change him for the world" etc. but I'm not sure I wouldn't, to be honest and that makes me feel like an awful person and a horrific parent.

Yes, I can't bear the thought of my son going through life feeling left out and being bullied. It's started already and I just know it's going to get worse, it's breaking me.