to not want to follow up on a diagnosis??

[HackAttack]

I'm starting to feel a bit worn down on this issue. There is a history of autism in my family, however an actual diagnosis had a terrible impact educationally on a close family member.

I have two children and I'm not blind to the fact my oldest is very different to the youngest and to a lot of other children. My oldest is nearly three.

He has HUGE phobia issues with food and is intensely particular about routines, how things should be and the 'ceremony' surrounding how things should happen. He needs patterns and for things to make sense and is generally pretty intense. The sensory thing extends to messy play being an utter no and other similar stuff.

Not following any of these can lead to meltdowns that go on for hours. I've lived with autism up close, I've had training in the area. I recognise there are traits here but I don't see the benefit of having it made official by some invasive process.

What do we get from it? He is just my son to me! I refuse to be someone who explains him by 'oh he's autistic' or defines him that way. I know how to support him already and we've overcome social anxiety already and his self esteem seems to grow every day. His speech is incredible, at his last milestone check he completed the activities up to pre school level, this isn't holding him back.

I've had a the talk about the referral process from the HV, family members, Sure Start worker and even random colleagues. It's exhausting, I don't want him labelled, he's not a bloody condition to me, he's my funny, adorable, fabulous little boy :(.

[Badoodle]

He is mindblowingly clever and funny and people seem to miss that and only see him being funny about his food or that one tantrum

This sentence also really struck me.

Unfortunately, as he gets older, you may find people see the wit and intelligence even less underneath the socially unacceptable behaviour. Thats where having a diagnosis and Statement can really help.

My DS would 100% be in a PRU or EBD school now if he didn't have his diagnosis and Statement. He would have been labelled naughty/challenging/aggressive/disturbed etc. Far worse labels than 'autism' in my book!

[BombadierFritz]

The biggest advantage will be for his understanding of himself and the hows and whys of feeling different from those around him.

[shazzarooney99]

See things like this cheese me off, here we are begging for a diagnoses so my son can get some actual help!!!!

[HackAttack]

Okay Adrift I came here for advice with my son, I'm listening to people but you just want a fight so get lost. I didn't say diagnosis made his symptoms more severe l I said the provision of medication was helpful for him because his sypmptoms (ADHD related) were more severe.

This is fucking scary and upsetting enough without some pathetic bully taking over the thread.

[Fairylea]

Same here shazzarooney.

[HackAttack]

For the record I am open to hearing that a diagnosis can help, I can't help but have been impacted by having seen it have a different outcome. I want the best for him and I wish the decision was clear. It's not about my feelings or anything like that, I just don't want to let him down.

[ILostItInTheEarlyNineties]

One of my nephews had suspected autism which his mum disputed. It wasn't severe when he was young, for e.g; he got upset without routine and disliked loud places such as train stations or big parties. His mum was always brilliant with him.

It was when he hit puberty that it all fell apart. He was badly bullied and refused to go to school and now refuses to get out of bed. Because he is over 16years old, he has to refer himself to be assessed, which he refuses to do.
I can't help thinking that it would have been different if he had some support from a younger age.

[AdriftOnMemoryBliss]

How is it not about your feelings? Your whole OP is about your feelings on it

I don't see the benefit
I refuse to be someone
I know how to support him already
I don't want him labelled

I...I...I

It isn't about YOU.

In the nicest way possible, I know how to support my DS, but i can't be with him in school all day every day, which means i have to entrust his care and support to the school and his teachers, but he wouldn't get that support without the input from the Occupational Therapists, the specialist LSATs, The SENCo, CAMHs, the Ed Psych...etc. To get the support he has to BE in school, i had to get him diagnosed.

If you want this to be about HIS feelings, then consider how he's going to feel in 2,3,4,5 years time when he has no friends, has been suspended from school for being violent during a meltdown,, or run off on a school trip because someone was eating things he doesn't like, or walked out of the school because no-one knew he was an elopement risk and is being labelled naughty?

How far does it need to go before you finally stop thinking about YOU and your 'i dont want's and think about him and his future and his needs.

[HackAttack]

Thank you Anutter, I've no idea why being afraid about this would encourage people to attack. He is my first child and people are right it's easy when I, or another family member are supporting him one to one but that wont always be the case. Maybe that will be when the situation will be different.

I can't manage fighting on an advice forum on top of all of this.

[TeacupsandFigs]

Sorry that it is so tough but your child will do much better in school with support. That support is not available as easily without a diagnosis. I am fairly certain that the difficulties that my DBro had in school were due to not having a diagnosis of autism and he really struggled.

[mygrandchildrenrock]

The whole 'statementing' process has changed considerably in just the last year or two. Your son would get an EHC (Education, Health Care Plan) and you, any professionals involved, nursery staff etc. would have an input into writing the content of the plan. The law says schools/every organisation has to make 'reasonable adjustments' to accomodate your son and meet his needs. This is very different from even a short while ago. (I don't know how long ago your brother's experience was)
I have a wonderful son, 18, who in on the spectrum. Having a diagnosis meant more as he got older, re the support at school. Extra time in GCSEs and A levels, because he needs more time to think and sort his thoughts out, he has very low muscle tone, so his wrist/arm gets tired from all the writing. He can get easily distracted so he can have a prompt reminding him to stay on task. He might have had these allowances without a diagnosis but with his diagnosis it is his right to have them and school/college ensure he does.
When children are young it can seem like a diagnosis might not help, but once they are school age it really does. My son could stay in at playtimes at primary school and read on the days he found the playground too overwhelming.
It really is worth thinking things over and getting advice from the National Autistic Society //www.autism.org.uk

[ILostItInTheEarlyNineties]

HackAttack Your son is so young, you don't have to make decisions straight away. I sympathise, it must be hard to hear and difficult to know what is best for your lovely boy. I would feel just as defensive and angry.

[Badoodle]

HackAttack - what advice are you after?

You have posted in AIBU and people with experience of this issue are responding in the main to say 'yes YABU'.

It is an emotive issue for all autism parents, so it is bound to get a little bit heated.

[PhilPhilConnors]

We fought for a diagnosis for my son, he was eventually diagnosed last year.
Whilst school are being utterly shit about it (don't believe it, can't see it , don't want to support as he lives in the real world ), given my time again, I would still fight for a diagnosis.

He knew he was different, and this was hard. Understanding why, and being able to understand why we do certain things at home has helped.
He has also got input from autism outreach, who are amazing and really on the ball.
I have hopes that it will help him in secondary - my oldest son is undiagnosed, zero support, we have had to take him out of school as he wasn't coping at all. I will never know if fighting for a diagnosis when he was little would have made a difference.

From my own point of view, I got my own diagnosis a couple of weeks ago. I can't tell you how much this means to me. Having grown up and got to the age of 40 always thinking I was crap because I found so many things difficult, knowing that I am autistic makes a huge difference.

IMO if you suspect ASD, the very best thing for your son is to be diagnosed, his outcome is likely to,be much poorer without it.

[HackAttack]

Adrift you attacked my using the word 'tantrum'. How utterly unnecessary, I'll learn the appropriate terms over time. You may well have a wealth of knowledge and I'm just starting out but I'm not going to engage with someone who is taking great pleasure in belittling me.

You are right. There is an 'I' in my posts because I am his mother and I will take advice from people giving it with the intention of helping. You want to make me feel like crap over something I am desperate to help my son with. Think before you trample on people.

[MrsJayy]

Your son is 3 what about when he is 13,23,33 is it fair to send him out to a confusing world where he can be supported in things like schools exams social interactions going to college work the list is endless your choice to go for DX but what about him

[AliceInUnderpants]

I just don't want to let him down.

You are possibly withholding needed support and medical intervention from him. Do you think he will thank you for that when he is older?

[HackAttack]

Badoodle I wanted to hear the other side. I want to hear people's experience of diagnosis being helpful. I've only seen the negative. If the overwhelming argument is that that is not the case then I need to rethink the referral.

What I want is to make the best choice for my son in an area I have only one bad experience to base my thoughts on. I seem to be hearing loud and clear that a diagnosis is important.

[curren]

Op I gave you my experience.

Which was I would have been better off having a diagnosis instead of waiting.

[MrsJayy]

I read a lot on mumsnet I was diasgnosed asd as an adult I cant imagine what it was like for these posters as children/teens must have been very hard negotiating life without DX