ASD diagnosis - to pursue or not

[Myshoesarenew]

I’ve just come from the paediatrician with DS1 (5). The referral was made by his SLT some months ago in response to som difficult behaviour in sessions and also school pressuring me for general behaviour concerns. Nothing major.

Paed has referred him on to panel and ASD diagnosis and I’m really not sure how I feel. DH is angry with me (grief?) because he says he’s a normal little boy and I’m ruining his life. I think he is mostly a normal little boy but has some challenging behaviour. He’s wilful, dominant and has some problems interpreting his feelings. He’s by no means unmanageable but he is demanding and it can be tiresome. Paed thinks he has some social development problems but is incredibly high functioning. He is bright and doing well at school, and he is developing emotionally but less developed than his intellect.

I’m a bit shocked. I was expecting to be told he’s fine and to go away. I don’t know what to do - do we just go through this process? Are there disadvantages to a diagnosis? I kinda feel like he’s the same person regardless. What does a diagnosis get us? Will labelling him make it easier or harder? Do we tell anyone? Lots of questions. And I don’t know who to talk to or where to start.

He’s brilliant. He’s delightful. He’s funny and clever and sensitive. And he’s not that different to other children. Or is he? I don’t know...

A diagnosis will help for the times when the world is too much for him. The help will be right there - you won't have to fight. Your son may not seem any different to other children, but if school have brought it up, there is something there. A diagnosis does not mean he is 'broken', it means he sees and experiences the world differently, and it will explain why this is so. It is only a bad thing if other people make you think so.

One thing you need to bear in mind is that if he has ASD, he’ll have it regardless of whether he has a formal diagnosis. It won’t go away just because he’s not been assessed for it.

We found a formal diagnosis to be helpful for our DS.
We noticed a marked change in attitude towards him from his school - previously, even when he was being assessed, the attitude was very much “he’s deliberately naughty and awkward”.
After his diagnosis, even when his behaviour was challenging, the school was far more ready to acknowledge that DS’s behaviour was for the most part a consequence of him struggling to cope.

And as pp says, it’s easier to get help and support when there’s a diagnosis there.

It’s just really not what I was expecting. I accepted the diagnosis because I Thought it would help me tell them to leave him be. But I also know he is different to my other child

Thank you for sharing your experiences btw. I’m having a little cry and a wallow but will be ok

Sorry that should be I accepted the referral. We don’t have a diagnosis yet

I’m a bit shocked. I was expecting to be told he’s fine and to go away. I don’t know what to do - do we just go through this process?

It's fine to be shocked and angry and yes you need to go through the assessment process and the sooner the better because it can take years to get a diagnosis.

Are there disadvantages to a diagnosis?

There are disadvantages to not getting a diagnosis. It's not so bad when they're little but as they get older they're likely to need more support in education and socially and as they get older the gap between them and their peers becomes massively obvious. It's so important to get those supports in place as early as possible because watching your child in distress because they aren't being supported is heart wrenching. Fighting for an EHCP is a pain in the arse even with a diagnosis.

Remember he won't be little forever, mines 12 now and will never leave home probably and be independent. It's so important to have a diagnosis if they need one.

Have your wallow and cry but don't let it last long.

Do not wallow and cry too much op. He is still the same little boy no matter what. I have a ds who is now 6 and was referred down this route when he was 3, he was discharged with my consent but we were told they would review him in the future at around 7. Strangely my younger ds aged 5 now presents as more complicated than him, however I am letting school take the lead with him and see where we go from there. Good luck op do not worry.

It’s OK to be sad and in shock but please don’t go down the path of denial, however tempting that may be.

My situation is different in that I knew there was something different about my son from a young age. I changed my mind constantly about autism. Sometimes I was in denial, sometimes I took the advice of well-meaning people who said “he’ll catch up!”. Anyway, I eventually made peace with the fact that he’s different and if that amounts to an ASD diagnosis, so be it...

I don’t believe there are disadvantages to a diagnosis. There are (clueless) people who will say “a label” in unhelpful but that’s rubbish. Knowledge is power, right? And if he gets a diagnosis of ASD then that will open doors to help and support throughout school. My son doesn’t have a diagnosis yet but preschool and their SENCO have already put so much in place for him.

He’s brilliant. He’s delightful. He’s funny and clever and sensitive. And he’s not that different to other children. Or is he? I don’t know...

I know how you feel, I’ve been there. Thing is, my son isn’t THAT different to his peers either. He’s friendly and social and has friends. But he is undeniably different in other ways.

I have found diagnosis has been very helpful for my ds. He was diagnosed 6 years ago and I don't think he would be the happy boy he is today without the diagnosis.

My ds does not tell anyone about his diagnosis he keeps it to himself. But I know he is happy that he has the diagnosis, he says it makes him feel special. He is 10 and seems to embrace who he is and knows what to do when he feels anxious around people.

So far, there have only been positives about the diagnosis. I have a feeling ds will always want to keep the diagnosis private. It is not something he will talk about with his friends.

Thanks all - I’m not sat here in floods or anything. I’m just a little blind sided. And a little hurt by DH’s reaction. But then if I wasn’t expecting it (and I’ve been to more speech therapy appointments etc) then he surely wasn’t.

This is all sounding quite positive. Especially @DerbyRacer talking about keeping it private. I really don’t know who to talk about it to right now. It feels like very private information for him and most of my friends are parents of his friends. I’m not even sure I want to mention it to school right now.

Most of what the doctor was saying was about future proofing for him at secondary school where he is more likely To slip through the net.

He had a very difficult birth - forceps and intubation. We are not sure if h was starved of oxygen and it took 17 minutes to intubate him. I don’t know if that’s part of this or not.

Thanks for listening

Autism is not a “label”. It is a diagnosis of a social communication disorder. If he is autistic, not going for the assessment won’t make him any less so. He either is or he isn’t.

Sounds like your H is in denial. We were the same for years and it didn’t help that anyone we did speak to us about our concerns just accused us of comparing him to our older son. However the gulf between my son and his peers just grew as they got older. We finally got him diagnosed age 9 and I wish we’d pressed it sooner.

Nursery asked us to have DS1 assessed three years ago. The final view was that he had many traits but was clever enough that they would not hold him back. DH is a teacher and we have agreed that if he ever starts to struggle we will go for a private diagnosis for all the reasons people have outlined above. Take the opportunity...DH honestly doesn’t believe there’s a downside because it prevents so many assumptions about the child being ‘naughty’.

They don’t hold kids back these days anyway. My son (before his diagnosis) had a nightmare year in school and even though I thought he might have actually benefited from being held back they don’t. Diagnosis is not a negative thing. He’s the same person he was before he was diagnosed. Your husband is being completely ridiculous and while I understand more than anyone being in denial you need to put him straight and tell him to snap out of it. Nothing has changed. All the good qualities you said about him are still him.

In your shoes I’d at least tell the school. If he’s coping in school nothing needs to change and if he isn’t then they have information to try and understand why and help him.

There’s no need to disclose to anyone else unless and until you wish to do so.

The ASD diagnosis will only help not hinder. As he’s high functioning think of it like dyslexia or short sightedness - he will develop strategies to help him cope and could one day be really successful. I know a lot of kids in my extended family with high functioning ASD diagnoses who have gone onto grammar schools / top unis / obtained good careers etc, and also some who haven’t. The ones who have got the right support they needed at school.

Firstly, have an unmumsnetty hug. I still have days where I can't quite believe this, 7 years on.

I delayed things by a year as I, like you, expected to be told that he is who he is, and that's that. When he received the diagnosis, I didn't want people to know or for him to be labeled as I felt it would hold him back.

Now he is ten and has just completed his first year at a special needs School. The last 18 months in mainstream were so awful, and heartbreaking, so I am grateful to this diagnosis to get him into a great school where his needs are met and he even has friends.

We have had daily therapies for the last six years, due to this diasgnosis.

I see a bright son for my future, and whilst it has been tricky (and I think it will continue to be), I am ultimately grateful for every chance that this diagnosis has allowed DS to have.

So... I would lean into it.

@DerbyRacer can i ask how you broached the subject with your DS? Mine is the same age, and when I tried to talk to him about it, he wasn't really interested, so I haven't forced the issue.

But I know that one day I will have to do it.
Would appreciate guidance.

Ps: OP, watch the A WORD. This was hard to watch for all of us (my DF esp as he reacted the same way as the grandfather), but I thought it was very well done.

We have just had a more productive conversation along the lines of the diagnosis actually belongs to him and not us and the ethics of withholding it - is it ours to withhold? What if he needs to use it and we don’t have it?

We talked a bit about being a left hander in a world made for right handed people.

I feel a little less sad. But still confused as to what is best

My son knows, but then he was in the room when we got the diagnosis.

He was older, at 9, and by that age really becoming aware he was not like most other children, so it was helpful to know.

I did feel funny disseminating it more widely as it was his private health information so I’ve told some friends and also others on a “need to know” basis. He’s actually pretty open himself now about his diagnosis.

My son has just recently received his diagnosis. The doctor who did it was really helpful. He said that when he sees children who are diagnosed at a later age, they are often refusing to go to school and having serious behaviour problems. Recognising the problem early can stop it getting to that.

I thought getting a diagnosis wouldn't change anything for me, but actually it has turned the world upside down. I am having to question everything I do - the way I discipline, my expectations of him, even my own career plans. It's a really hard time, but I am sure now that it was the right thing to get him diagnosed and I have already learnt so much about how I can help him.

Please PM if you want to chat.

Thank you all for being so lovely. Are there any parenting books you would recommend for ASD kids? We have the gentle discipline book which I really rate but it would be good to read something specific

I guess I’m also now wondering what does this mean for me? I was bright at school, I’m not great at keeping friends (make strong bonds but don’t stay in touch), I can sometimes be awkward in a group. Maybe he got it from me!

The positive of having a diagnosis
*if she starts to struggle it will be already there as a reason why
*things being put in place to help him when he does struggle, even something as simple as ear defenders when the noise is too much
*differentiated work and strategies
*some children do struggle a lot with understanding why they are,act and feel different to others. A diagnosis can explain this to them.
*different approaches to parenting and behaviour management, some things that are fine and work for NT children will be pointless or even make things worse for a child with autism.
*hopefully more understanding from those around him and support in navigating a world made and designed around NT people.

He's still your little boy. He's still smart,funny,sensitive etc. The diagnosis won't change him. It just is. If he needs the extra support he'll have it as backup ,if he doesn't..great.

Thank you for giving me a different way of seeing this. We have had a good chat and things are a bit less fraught here. We’ve decided not to tell anyone for now (he’s finished until September now anyway as he has an operation scheduled for next week). I guess we wait and see.

And I guess we maybe view his behaviour differently too. How should we discipline him if it’s a manifestation of being overwhelmed?

I am glad that we've been able to help you. As for your DH - my XH didn't want to believe that our DD1 has severe multiple, potentially fatal allergies and I had to watch him like a hawk because his denial could have caused her death. You at least don't have this to worry about. However, you need to be sure that he is not going to deny your DS' problem. People can think that something like this is shameful and those days are gone. It is what it is and it is part of your DS, like his hair and eye colour. By all means let him grieve the loss of the son he thought he had, but not for long. Remind him of the wonderful son that he still has, who might be a bit different from a lot of other kids, but is still yours and still wonderful. This is not something that he should be ashamed of and you need to be vigilant so that this feeling is not passed on to your DS, should you receive this diagnosis.