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 :(.

[Xmasbaby11]

My dd is 4 and haS been a concern at nursery since 3. Her social skills were weak as was her concentration and various other things. we've just seen a paediatrician who assessed her development and thought overall she was doing well but there are some areas of concern. They are considering assessing her for autism and looking further at her behaviour at nursery before even deciding on whether to assess her. They think its unlikely she has autism but it presents differently in girls and can be subtle. We are happy for them to assess her for the following reasons -

She has support at nursery now and will need that continuing when she starts school on Sept

She has really come on recently and may catch up with her peers. However, we don't know that. She may continue to struggle and she may develop new problems. If she isn't in the system it'll take months to get the ball rolling again.

[HackAttack]

Mygrandchildrenrock, that does make a difference, my brother's diagnosis was a while back (not ages there is a big age difference) but more than a couple of years. Thank you

[TheDisillusionedAnarchist]

I think the thing is that it isn't really the choice between labelling him and not labelling him (if he does have autism)

It's a choice of 'labels'. He can have the autism label or the 'weird' 'naughty' labels. I think the former has to be better.

Autism is increasingly common. There's a good chance he won't even be the only one in his class. With a diagnosis he can access autism specific services. Even more importantly you preserve his self esteem. I can't see the loss in a diagnosis for you if it's needed.

He will still be the same child. He won't be more or less autistic because you have a piece of paper saying 'autism spectrum condition' on it.

[AdriftOnMemoryBliss]

Sorry if i'm coming across as a bully, not my intention, i have AS myself and can sometimes be a bit forthright in my opinions.

I spend a lot of time fighting my DS's corner to get him all this help so he can function on a daily basis in school.. it frustrates me when i see people in your position. Apologies.

Can we start again?

I know what its like growing up with a sibling on the spectrum who wasn't given the support they should have been, my older brother has Autism, and my own passion for getting my DS help is based on MY experience of seeing how badly my own brother struggled without it because our parents never fought his corner, a decision that even now impacts his every day life.... the stuff i'm going through with my DS is helping my brother because as i learn about my sons condition, i'm helping teach my brother about his.

Its such a scary process, and i do understand that. I stood where you did 5 years ago, staring down the barrel of knowing something wasn't right, and i've had to fight to get son help. He was coping at 4,5 and 6, then it started to go down hill.

It was manageable up until yr3, then it suddenly, almost overnight went spectacularly wrong, like a switch had flicked. Now he's in yr4 and needs full time 1:1, so many adjustments and aids just to get through his day and access his education.

I would hate for you to go through the same thing, because the last 18mo has been SO stressful, for him and for me.

Please make a start, get him the diagnosis, you don't have to DO anything with it, but if it all goes tits up, at least you have it and can start getting him the support he needs.

[Xmasbaby11]

Sorry I hadn't finished my post!

Since your ds is already having problems and hasn't started nursery I think I'd definitely want to pursue getting support. It really can take a long time to get help and I'm the meantime he'll struggle.

If my dd has autism is would be mild, I think. I don't see it as a label, just a way of understanding how she thinks differently to a nt child and how we can help her and enable her learning.

[EweAreHere]

Do your DS and his future school a favour and get him assessed. Without a statement, he may not get the specialized support he needs to succeed at school. And education is so important! And without a statement, the school won't get any funding to provide additional, specialized support to him if he needs it, and that will suck time, resources and attention away from the other 29 pupils in his class if his future teachers are trying to cope without extra funding/support for him if it's needed.

[HackAttack]

Thank you MrsDeVere, I'll openly accept I don't know enough. There is no selfish agenda here, I just want to get it right. He has an offer at the school nursery we wanted. Fear is most likely a big part of how I'm feeling right now. My boys are my world and I want to make the best choices for them.

[Girliefriendlikesflowers]

I do understand where you are coming from op I was the same with my dd, I didn't want her labelled but have actually now gone full circle and can see the benefits.

My dd has sensory processing difficulties and I have found the assessment process not to be invasive at all, the advice given by the OT has been helpful and insightful and its completely changed the way I approach some if the things my dd struggles with.

It has also helped my dd feel better about herself, knowing that there is a reason for why she struggles and its not just her being awkward or difficult.

That said your ds is still very young, there is no harm is watching and waiting for a while longer and also to see what nursery think.

[Owllady]

You're in shock. Your brother had autism and a negative experience in school and you've realised your own child has autism and you're focussing on your brothers negative experiences. I'd say that's a pretty normal reaction to shock tbh

[HackAttack]

Can I just underline one thing? I do not see autism as a negative. I love my brother for who he is, all of it. It is part of who he is, nothing more, nothing less. My negativity is about how some professionals then reacted and some parents. He got name called and excluded, not by children but by parents. That frightens me.

I am willing to hear, though, that the support is crucial. I'm not going to knowingly make his life harder.

[CauliflowerBalti]

If he ends up being treated badly at school, you change schools. But things have changed a lot over the last 20 years. What happened to your brother is not the norm for children with a diagnosis of autism.

And just because he is diagnosed doesn't mean he will necessarily need special treatment at school. It just means the door is open if he finds things difficult.

From a peer point of view, my boy is 7 and there is a girl in his class with Aspergers. All of his classmates know that she has sensory issues and a need for things not to change, so when she has a meltdown over something that they don't understand, it's because of this. So she is fully and properly included as a friend. Her difference is accepted because there is a mitigating circumstance. She's not just 'weird'.

Your boy will always be your intelligent, brilliant, beautiful, funny gorgeous boy. A diagnosis won't change that one bit. It will help other people see this too though. It will help them look past any challenging/unexpected behaviour.

[GrumpyMcGrumpFace]

I can completely understand your desire for his educators to see him as the person he is, and to develop his abilities to the utmost.

However, when you imagine him in a school, maybe in a class of 30 (no idea what sort of school you're intending he should attend), in order for those abilities to be developed, he may well need some 1:1 attention so as to tailor the education to his particular needs. In order for that to happen, the school will need a diagnosis so that they have something to apply for the funding with. Can you imagine that he might get rather lost and frustrated when he's expected to follow the same routines as everyone else and learn at the same speed as everyone else?

So I don't think you can assume that the diagnosis is a stick to beat your son with (which does seem to have been the problem for your poor brother, and I'm very sorry to hear about that - it sounds awful). I think you will have to pick your school very carefully - which is difficult in itself - but once you have, please do equip them as best you can to be able to give your son the best possible education.

[CauliflowerBalti]

Oh, and the girl with Aspergers is fully included by most of the parents too. So is the girl with hyperactivity issues who must not at all costs eat anything red, even naturally red, even strawberries. We cater for this, because we are good people and because we understand that their behaviour has a medical reason. The world is mostly full of good people. Try trusting a little bit. What happened to your brother won't happen to your son. You won't let it.

[MrsJayy]

I used to work with children who were autistic many years ago they were severe (maybe not the right word) since then the spectrum is recognised better i think anyway I know you dont want your son labelled and you want him recognised for who he is and not what he may have I get that however do play it by ear dont dismiss DX you and your son may need it.

[Italiangreyhound]

HackAttack re "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" It must be frustrating but hopefully people will indeed see the clever and funny little boy you have.

We are not our labels, but the a 'label' can help to identify aspects of us. I am female, that means I need to go for a smear test every so many years and now a mammogram thing. Saying I refuse to accept the label of 'female' would not stop my needing these services and to refuse the actual services could be harmful for me.

Likewise, your son is not a label, and neither are other children with ASD, he is indeed your lovely boy, and always will be. You do not yet know what the diagnosis will show and I feel you do have time to wait a bit before pursuing this, although I would still want to talk to professionals about what you have noted and how best to 'manage' any difficult behaviour just as one would with any behaviour which could cause difficulties for a child.

Please don't allow him or let others make him feel bad about himself, if it turns out he is on the autistic spectrum, or whatever the assessment shows up, make sure he knows it is not a bad thing.

If this is the case, ASD, iit does mean he may process things in the world slightly differently. My dd is very dyslexic and finding this out was very helpful, although the school held back from this because they did not want to label her.

After about 4 years of difficulties we also got confirmation our dd has autistic tendencies around relationships. No actual help, but at least the awareness it was not due to our parenting (as some said, telling me this to the point I cried, that I was at fault). It does mean certain things trigger dd and are difficult. Understanding all this helps us.

Re "The issue for me is that the family member of mine who got diagnosed was treated abysmally by education as a result. The discrimination was disgusting. " How long ago was this and where, local to you, things do change but knowing this might happen also helps you look out for it.

Be aware children may be treated differently even without a 'label' but being able to say that you child is being treated badly and to get change will be (hopefully) within your power. Things are different now, parents do get more say and schools are more inclusive.

Knowledge is power for us, for the school and most of all for her.

Good luck.

[AdriftOnMemoryBliss]

You said your DS has quite significant sensory issues? Here is a positive of what CAN come from diagnosis.

my DS has sensory problems as well, all the food issues...etc. Diagnosis has meant he has had access to an Occupational Therapist who has helped teach us some methods to help DS on a sensory level, and we've also got a referral to a specialist who deals with just Sensory Processing Disorder in the hope we can help him with his eating and all the fun that involves ;)

It also means in school that they have adapted his classroom so its less of a problem for visual and auditory overload. He has a sensory chew and other visual and sensory tactile toys on his desk that his 1:1 provides. The school have also given up an office to create a sensory room for him where if he's in trouble he can go to (its opposite his classroom) and go and relax, its full of bubble towers and big squishy cushions and painted with calming colours.

None of that would be done without the diagnosis. :)

[corythatwas]

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."

I can see why you are angry with your db's school: they clearly handled this abysmally.

But you might want to consider what the alternative to a diagnosis would have been. Without a diagnosis, no one would even have questioned whether he had control: he would be expected to live up to the expectations of any NT child and would have been punished if he couldn't. If he could not cope in mainstream school the next step might have been a PRU unit. Or they might have decided it must be a case of faulty parenting and involved SS.

Speaking as someone who has had a child with undiagnosed SN (though of a different kind) in school, the cost of having nothing to exlain to the teachers was pretty high for the whole family, but highest for dd.

Basically, a school is a place where hundreds of children have to comply to make it all work and where teachers have to know when they need make an exception; they can't just make ad-hoc decisions of "well, Katie probably won't mind being told to stop doing X but Lucy might have a meltdown".

There are two possible descriptions of a child that cannot conform (refuses to walk as my dd, insists on his own routines as perhaps your ds): SN or disobedient. Which would you want it to be?

It is understandable if you don't want to do this right now; he is still little and you are there to get him the help he needs. But I wouldn't leave it too long. Sorting out support for a child with SN can take years. Having a diagnosis in place buys you time.

Personally, I would either push for that diagnosis now or aim to home educate.

[moosemama]

Hack I can totally understand how worried and scared you are at the moment. I have been there myself, as have many other parents on MN.

AIBU is not the best place for this discussion and I would ask for the thread to be moved to Mumsnet Special Needs Children, where there are lots of parents who are going through or have been through very similar situations and all the associated fears and concerns. Also, if you just need general support, please do go to the Goose and Carrot Pub Thread, which is where a lot of us hang out just to share experiences, both good and bad and give each other support and advice, as and when needed.

My eldest ds has ASD and wasn't diagnosed until he was 8, although we knew he was different than his peers from when he was very little. We didn't know who to talk to, where to turn for advice and school didn't want to know. I really wish we'd known about Mumsnet Special Needs boards back then. When we eventyally found MNSN it still took us a couple of years to get our heads around everything and take the necessary steps to get him properly supported.

He muddled through infants, with lots and lots of support from us, as we tried to work out what to do for best, but once he hit the juniors he literally fell apart in front of us and we had no choice but to call in a crisis team to help us untangle exactly what the problem was.

If it helps, once he'd been through a multi-disciplinary assessment - which he didn't find at all worrying or upsetting - we were given the choice as to whether or not we wanted him officially diagnosed. We chose to accept the diagnosis and whilst, yes, we have had battles with school at times and things haven't always been plain sailing he is now a very happy, settled 14 year old, who is comfortable with who he is, enjoys school and has a lovely group of friends. If we hadn't accepted the diagnosis, knowing my ds, I am pretty sure he would be a very different, confused and anxious boy, through not being able to understand why he doesn't fit in with the majority of his peer group or why he finds some things so difficult to cope with.

Your ds is still so little and as you said you just want to make the right choices for him, which every single parent here can understand. I do think MN can help you work it all out in your head, but the main boards might be less helpful than the SN boards.

[Aspergallus]

I'm with you OP. Let him be who he is.

You might revise your decision at an appropriate time during schooling. But for now, just let him be.

[Medusacascade]

It's worth bearing in mind that a loveable quirky two year old with some difficulties that can be managed at home by you is very different to the ten year old child he will become. You will want a descriptive label/diagnosis to help get him the support to thrive and achieve. And, to protect his rights and make reasonable adjustments.

Without this, your child will most likely struggle unnecessarily as he gets older and due to processing, communication and sensory sensitivity, finding school and social environments extremely stressful.

A diagnosis is not a magic wand but will help him and others begin to Interpret and understand the world around him putting supportive strategies in place.

Also, and this is not a dig, you do need to becareful with terminology and negative use of 'labelling' as so many of us parents fight hard to get a much needed diagnosis. I nearly had a Diagnosis Party to myself when my nine year old was diagnosed with ASD. I was so happy I cried because it finally gave us a framework to get support and reasonabl adjustments within school.

[BackforGood]

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

Please do. You have 3 pages of posters offering their experiences here, and, everyone is united, except I think for one post, who says they wouldn't push you either way.

I also agree with MaryZ that if you go away and have a cuppa then come back in a while and re-read Adrift's posts, then you'll see she's not attacking or having a go at all. she's answering what's being asked.

MrsDevere - the other side to that coin is, with a diagnosis, the Nurseries are able to seek support (as in advice) and funding for additional support in Nursery MUCH more easily with a diagnosis than they are with a child without a diagnosis (or who is not going through the assessment process).

[Italiangreyhound]

HackAttack it's really clear you love your son and just want to do the best for him.

Lots of parents have experienced this, it is much more common and much better understood than it once was. please do not feel got at, at all, we all just want to help.

[GrumpyMcGrumpFace]

btw I'd also recommend, when it comes to schools, talking to parents who have children with autism - sorry to seem to be labelling again... but it is the case that schools that are "outstanding" for some children really aren't for others. My good friend's son has had exactly that experience - he is very very clever, but does not deal well with the very regimented style of learning that the school gets their "outstanding" label for, and has become very miserable and the teacher thinks he's "difficult" etc etc, you can imagine I'm sure. But when he's just hanging out with adults, how fabulous is he?! He needs a different style of teaching, and that's probably not one that would be get an outstanding from Ofsted. TBH, my hippy dippy 70s school that would probably be in special measures would be great for him, as it was for me. Sorry, rambling, but do you see where I'm coming from?