to not want to follow up on a diagnosis??

(112 Posts)
HackAttack Mon 28-Mar-16 16:17:14

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 sad.

ProcrastinatorGeneral Mon 28-Mar-16 16:34:58

Without the diagnosis you'll get bugger all help from school as he grows. You can manage behaviour now, but if you plan for him to go into the school system you can't expect them to use the same kid gloves that you do without there being a definite reason why. You'd be doing your child a disservice if you don't chase up anything that can make life easier. It's also not a short process, so I'm not surprised professionals keep chasing it up with you.

Sorry for the bluntness.

curren Mon 28-Mar-16 16:37:36

I was diagnosed with Aspergers as an adult. In my opinion, it's better to know.

I spent far too much time worrying about why I wasn't the same. Exhausting myself trying to be the same. I wish I had some help and support. I wished I could underst stand why I felt differently about things. I spent my entire childhood thinking the person I was, was bad. And then trying to be like everyone else and be 'good'.

But that's me. You have to make this decision for your child.

PeppasNanna Mon 28-Mar-16 16:41:51

I am responding as a parent of 2 dc who are diagnised with ASD & ADHD.

Your child meeds a diagnosis to get support in school.
Sorry to be blunt but this isn't about you. Its about your dc & getting him all the help available.

Good luck

Lonecatwithkitten Mon 28-Mar-16 16:47:01

Even with a diagnosis it is hard getting the right support in school without it you might as bang your head against a break wall.

Silvercatowner Mon 28-Mar-16 16:47:13

Your child needs the diagnosis. With regard to your perspective of him it won't change anything - he'll still be him. But for him, it will access extra support in school.

VoldysGoneMouldy Mon 28-Mar-16 16:49:44

You might not want to explain his behaviour with a name, but he's going to need the medical back up of having that when it comes to school, and things beyond that.

Don't look at it as having a label - look at it as having an explanation. You're not changing who he is by getting a diagnosis. You're going to make it easier for him to be himself if there are answers. You're not always going to be there to help him through.

On top of that, with a diagnosis, there is support both for him, and also for you, which you may both need at some point.

HackAttack Mon 28-Mar-16 16:51:25

The issue for me is that the family member of mine who got diagnosed was treated absymally by education as a result. The discrimination was disgusting.

My son starts nursery this year and if he struggles I wouldn't hesitate but I'm not convinced he will. The change from last year (when I would have agreed intervention was inevitable) to now is significant. I personally think he is on the lower end and may be fine with patience and support from us.

How is this about me? If anything a diagnosis mean support for me not less so that comment is confusing.

cankles Mon 28-Mar-16 16:55:48

it also provides a framework for him to view himself as he gets older and perhaps (like my ds2) he has the insight to realise he is a little different, that he finds it difficult to make friends and struggles with change. Having the dx has helped my son understand himself. He has good self esteem and a positive outlook and we can all work together (ourselves, wider family, his school, etc) to support him in school, home, etc. It's transparent.

noeuf Mon 28-Mar-16 16:56:19

He's only two! See how he goes at nursery and that should give you an idea of whether you need a diagnosis to either explain his behaviour or to access support.
Btw my son isn't just a condition to me - be a bit careful when you are talking to other parents as it can be a bit sensitive.

HackAttack Mon 28-Mar-16 16:56:49

Maybe it would give more context if I explain what happened with my other family member. He started primary, after having had a pretty tough time at nursery, and they kicked off the diagnostic process.

The pediatrician and staff involved from a medical perspective were incredible and really supportive however school staff were sickening. They ignored the diagnosis down to the damn wording. While they accepted he had autism and ADHD, they stated in 'their opinion' he still had control and was choosing his behaviour (contested by the pediatrician). The result was they influenced his statement to the point he was refused access to arc provision, autism specific options in the area and instead he was chucked in a general EBD school where he suffered so much bullying and had his needs neglected anyway.

HackAttack Mon 28-Mar-16 16:57:55

Sorry noeuf I didn't mean other parents when I said that, I meant how some people have referred to my son since observing him if that makes sense.

noeuf Mon 28-Mar-16 17:02:04

No I know you didn't, that's why I tried to phrase it carefully. It's just really easy to either take offence or upset someone when talking about it ; it was more just a heads up.

I do think you can afford to wait. 'Y friend did and by the time he was six it was clear she needed a formal dx

AliceInUnderpants Mon 28-Mar-16 17:03:30

The experience your family member had.... do you really think your son will get on any better without diagnosis?

AdriftOnMemoryBliss Mon 28-Mar-16 17:06:57

just because your relative had a shit experience, doesn't mean your child will.

my son has autism and adhd and while i've had some issues with getting the school to understand his needs as they don't have experience with it, i can't say i've ha any of the issues your relative has.

Quite frankly, in the end, its not about you, its about him, and not getting him a diagnosis means he won't get ANY support, and its not going to go away if you ignore it.

its about what best for him now and in the future, not your feelings.

HackAttack Mon 28-Mar-16 17:07:58

Thanks, that's been part of my argument, that he isn't even in nursery yet. He now manages well at playgroups after so much gentle encouragement and support. Now when we get there he shoots straight off and is starting to interact a little with other children. He's made so much progress.

The sensory stuff is going to take longer, but we are managing. I just wish one person could spend a day with him and at the end of it have something else to say other than 'have you thought about talking to someone?'

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. It makes me so sad sad

ILostItInTheEarlyNineties Mon 28-Mar-16 17:08:23

The problem with your family member was that their diagnosis was ignored by staff. Is that not what you are essentially doing?

QuestionsAboutDS Mon 28-Mar-16 17:09:34

That doesn't sound like the diagnosis caused the problem with your relative though Hack. It sounds like the school disputing aspects of his situation, which is far from unusual. But it doesn't seem that it would have been any better without the diagnosis?

You can of course leave it a year or two to see how things develop - he's still young. But what I will say from experience is that if an intelligent articulate child without a diagnosis starts screaming with pain in music lessons and running out of the classroom whenever the class are asked to sing then he may simply be punished for it. If a child with a diagnosis behaves like that then a solution will be found to work around it, and whether that's some really imaginative way to enable him to participate or just putting him in the library with a book, it's still an improvement.

AdriftOnMemoryBliss Mon 28-Mar-16 17:09:53

oh, and i don't consider it a label.. quite frankly that attitude is fucking offensive.

He is still my lovely, wonderful, quirky, funny boy, but he's also autistic and significantly disabled by that, it affects him in every way possible. Its just part OF him, not an extra to be ignored and made out like it doesn't exist or changes who he is in any way.

HackAttack Mon 28-Mar-16 17:10:54

Again how is this about my feelings? No one is explaining that!

I want to protect him from what I saw with my brother. Diagnosis made his life tougher in some ways. It helped in terms of medication but his symptoms were considerably more severe.

If I believed a diagnosis would equal a more positive life experience for my son there wouldn't be a hesitation, but I am unconvinced that it would. The impact is on his feelings not mine.

starry0ne Mon 28-Mar-16 17:10:59

I can see why this would affect your decision..However Without the label other family member would have had same result..All schools are not equal...

I would also say my Ds has been struggling in school though liked it and finally got a diagnosis now 8... It isn't ASD however it is the best thing that happened to him..He now understands why some things difficult, also the schools approach has changed and he is flying high ( although still playing catch up and not where he should be) ..I think without Diagnosis we would not be there.

Badoodle Mon 28-Mar-16 17:11:16

I think the insight you now have into what went wrong with the education system, professionals etc re: your relative means you are way more informed than some parents are going into this. I see that as a positive. You can't be fobbed off.

Personally - although having a diagnosis and a Statement certainly hasn't waved a magic wand for my DS (AS) - without both I cannot imagine how he would have fared, really. Both have been absolutely crucial in us getting him the education he deserves and the professional interventions he needs, and in helping those around him the understand his needs - and now, aged 11, at helping him to understand and be proud of who he is.

The way your relative was treated is shocking. Its hard to say what went wrong, but personally, I would never have agreed to a Statement I wasn't happy with, I would have fought it, and my child would be placed in an EBD school over my dead body. It sounds like your relatives weren't properly informed about their rights and didn't have the right support. It sounds like an horrendous situation.

AdriftOnMemoryBliss Mon 28-Mar-16 17:11:21

its also NOT a tantrum.

Fairylea Mon 28-Mar-16 17:11:36

The experience of your family member is not down to the diagnosis, it is down to the shocking ignorance of those who were supposed to be supporting him. Nowadays you would complain and take it to an independent tribunal if you wanted to, the new ehcp are tighter and harder to ignore (see the ipsea website for information).

I am the other end of this - I am adamant my son has asd (he is nearly 4) and have been told he does for nearly a year only for his case to get to diagnostic panel and be refused a diagnosis. I am absolutely livid and going to ask for a second opinion. For us a diagnosis would bring extra support from autism services and also the chance to apply to a new autism specific special school for children that wouldn't normally fit into a special school due to higher cognitive ability that is due to open in our area next year.

Most people who have children with asd really want them to have a diagnosis as they recognise it's a way to getting them better support, not less.

AdriftOnMemoryBliss Mon 28-Mar-16 17:12:05

Diagnosis DOES NOT make the symptoms more severe. What a stupid bloody comment.

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