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DP in denial over DS1

(23 Posts)
Somethinginthecordelias Sun 16-Oct-16 14:49:30

I hope this is the right topic to post in. DS1 (3) has been referred for an ASD investigation by his nursery, but DP is refusing to believe there is anything there. (We're both women, just to avoid pronoun confusion!)

I've suspected something for a while, he's verbal but he rarely seems to have a conversation with anyone and spends a lot of time in his own world completely oblivious to everything around him to a much larger extent than most children his age.

An example that sticks out is that we enrolled him in a toddler football activity and while at the park a loud plane flew over relatively low. Every other child reacted (from excited to scared) but DS remained completely focused on playing with the grass as if he hadn't even heard it.

There are more examples but every time I try to discuss with DP she doesn't want to admit it's even a possibility. If I'm completely honest, I think I'm probably part of the problem... It seems so very obvious to me that I struggle to see how she can't see it. I'm finding it particularly hard to strike the balance between being supportive of her and trying to push for assessment because I know the earlier we can get support the better it will be for DS, especially when he starts school next year.

I just wondered if anyone else has any experience of this and how to tread the balance delicately?

Jasonandyawegunorts Sun 16-Oct-16 16:32:37

I've not had experiance of this BUT it's very common for one partner to be in denial, so you aren't alone in that respect.

Jasonandyawegunorts Sun 16-Oct-16 16:33:23

A quick question has he had his hearing checked?

zzzzz Sun 16-Oct-16 16:41:24

It's fine to disagree.

Diagnosis of an ASD is an incredibly exacting process. You won't get dx if there is the slightest doubt.

I honestly think a parent in each camp could be a positive.

As far as early intervention goes, it's pretty much all DIY anyway so dx won't impact that.

bialystockandbloom Sun 16-Oct-16 16:54:30

It's seen very commonly here that one partner is usually much more attuned to something amiss - my DP was over a year behind me to see what I saw with ds, and to then admit we needed to press for assessment etc. in my case it was (as is so often the case) I was sahm and spent much much longer time with ds, especially around other children do could much more easily see differences. Dp told me once that any problems were because I didn't take ds to enough toddler groups hmm

I have to respectfully disagree with zzzz - it's fine to have different views eg about what approach/therapy etc, but not helpful at all if the 'differing view' holds up any assessment, intervention or crucially, support at school.

Has DP has the conversations with nursery too OP? It does help you that they are also raising concerns, she can't do easily pass this off as any of your anxieties etc.

Give her time - as we all know it's a very difficult thing to have to face and accept, everyone has to come to see it for themselves. But I'd definitely let nursery push on with the assessments. All the best to you all smile

zzzzz Sun 16-Oct-16 17:35:01

I think mine not being so attuned to things helps me stretch my expectations. I do agree that the weeks when behaviour is down to my pandering/poor parenting/controlling behaviour are a little hard to take or forgive. grin. Mercifully I have the facility to verbally flay sling from bone if really riled so there is a cathartic element to that too. It's also probably slightly easier as I genuinely believe what happens at home is key and the rest is damage limitation or icing on the cake.

Somethinginthecordelias Sun 16-Oct-16 17:37:34

Hi, thanks for the responses!

His hearing has been checked a few times, no problems have ever shown up before so I think it must be okay.

For now DP is supporting the idea of assessment, the nursery originally raised it earlier in the year (he started in January) but she wanted to wait for a few months to see if it was just him taking a while to settle in. When we had the last meeting with them about it, they stressed that starting school could be very difficult if he doesn't have the means to access the support that they think he needs (I would agree with them) and I think I'm very concious of how quickly next September is approaching and starting to worry about that.

zzzzz Sun 16-Oct-16 17:54:01

Be careful not to buy in to the idea that dx is either a hurdle to get over before getting support or a ticket to that support. It REALLY really isn't. (That's not saying it isn't needed or helpful but it is NOTHING to do with support in school, which is needs driven).

Actually you have an ideal opportunity to ask (by email) what nursery see and what support they have put in that has helped and what they feel might help at school.wink. Emails create automatic dated evidence grin

bialystockandbloom Sun 16-Oct-16 18:39:50

Slightly off-topic but zzzz an assessment - if it leads to a diagnosis - can mean getting an EHCP so has everything to do with support at school! Some very proactive schools might give support without but are under no obligation to do so, and may also only give the kind of support that they deem needed, which in reality may have no positive effect on the child at all. I agree that in many cases what happens at home can be more helpful and effective (that's definitely been our experience) but it's misleading and sorry to say but imo irresponsible to put someone off from seeking official support. At least with an EHCP parents have a much greater input into what support is given in school, and is unequivocal - without an EHCP parents are at the mercy of the whims of school who can withdraw support at any time if they feel like it. And though an EHCP is supposed to be needs-based rather than diagnosis-based, it's much more straightforward to get one with a diagnosis than without.

Somethinginthecordelias Sun 16-Oct-16 19:59:19

Zzzz- that's a great idea about emailing them, thanks! I'm definitely going to do that.

Bialystock what you're saying about support at school is very much the impression I got during the meeting at nursery when DP asked why they seemed so eager to push for assessment and not wait to see how school goes.

I would hope he'd get the support he needs either way though,, but I feel like if there is anything we can do to help secure that it can only be helpful.

zzzzz Sun 16-Oct-16 19:59:53

Apologies OP but as ds has both an EHCP and a diagnosis and had considerable focused support in school before either I have to address bialys post.

Slightly off-topic but zzzz an assessment - if it leads to a diagnosis - can mean getting an EHCP so has everything to do with support at school!
Having an EHCP is NOT dependent on having a diagnosis. In fact I think ds's came through either at the same time or just ahead of dx. EHCP is need driven just as the old statement system was. This is the obvious way for things to work if you think about it because as the old saying goes "if you've met one child with autism you've met one child with autism"....ie same diagnosis different needs.

Some very proactive schools might give support without but are under no obligation to do so
Rubbish the school are obliged to identify and support ALL SEN with or without diagnosis

and may also only give the kind of support that they deem needed, which in reality may have no positive effect on the child at all.
well yes, lots of intervention has little impact and most people give the input they deem needed (what else would they do???? confused )

I agree that in many cases what happens at home can be more helpful and effective (that's definitely been our experience) but it's misleading and sorry to say but imo irresponsible to put someone off from seeking official support.
Have I done that hmm. My opinion is that professional early intervention is MASSIVELY over egged and not the driver in outcomes, based on my personal experience. I'm not suggesting NOT seeking dx (this would be laughable if you had the slightest understanding of my own journey but hey ho), what I'm suggesting is not expecting dx to lead to support and definitely not to wait for it to provide that support yourself.

At least with an EHCP parents have a much greater input into what support is given in school, and is unequivocal - without an EHCP parents are at the mercy of the whims of school who can withdraw support at any time if they feel like it.
I had lots of input into ds's support including sitting in on interviews with prospective TAs and giving my opinion on the shape and nature of the support plus an open line of communication to all members of staff. To set up a narrative that feeds into a "school don't care and will screw you given half a chance" is in MY opinion irresponsible and frankly inaccurate.

And though an EHCP is supposed to be needs-based rather than diagnosis-based, it's much more straightforward to get one with a diagnosis than without.

I have NO idea if this is true and doubt there is enough evidence to support this claim. Ds was one of the first wave of children in my LA to get an EHCP, he did not have a dx and I believe half the children in most SS don't have a formal dx (these schools are NOT accessible without EHCP). Sadly or rather wonderfully depending on your point of view not all of us fit into neat diagnostic boxes.

LongDivision Sun 16-Oct-16 20:02:53

We have an EHCP, full time 1:1, no diagnosis. It really should have nothing to do with a diagnosis -- if he's struggling at nursery or (crucially) failing to access the curriculum, he needs to have support.

Somethinginthecordelias Sun 16-Oct-16 20:39:05

It's reassuring to hear my worries about school are probably unfounded. I have no experience of any of this and my tendency to think the worst kicks in I think!

We've had a few meetings with nursery to set supports in place and I'd definitely like to be proactive with the school in identifying anything we can do to help. I know he struggles with some of the activities at nursery for various reasons and I do worry that will hinder him a lot more in school.

bialystockandbloom Sun 16-Oct-16 21:47:59

I'm sure many schools will be happy to work with parents to provide the support that the dc needs and that you agree on, but it is undeniable that you cannot rely on this. Schools CAN wriggle out of providing anything if it is not a statutory obligation.

Zzzz my point about the type of support is that eg a school may say "oh yes a child with autism, we'll give him teachh and visual aids". No good whatsoever for my ds. If we hadn't got our preferred type of support written into ds's statement there was no way on earth school would have provided it. That has been our experience. You have yours, which is clearly different. I totally agree that a dx does not automatically lead to support (ha!) - not suggesting that at all.

zzzzz Sun 16-Oct-16 22:30:26

I'm sure you have your experience bialy but that doesn't make describing my post as "irresponsible" and "misleading" because of some imagined suggestion that OP not pursue dx, ok.

FWIW ds had full time 1:1 (including breaks), modified beginning and end of day, writing slopes, pencil grips, foot rests, totally bespoke curriculum to shadow his class but at a level and in a manner he could access, SALT input, EP input, OT input, CIT input, and he was included and valued in school before dx or EHCP. I was listened to and supported as were his siblings and I was and am impressed. Ds went on to a SS for secondary and we are still settling there but I feel it has a LOT to offer him.

Most teachers will have learnt about teach and visual learning, they will have lots of stereo types and misinformation. They will have taught other autistic children who are very different from your child and possibly not expect the difference to be so pronounced. That's the reality. Very few want to fail your child or have an antagonistic relationship with home. If they do I doubt that they can help at all.

Mumoftwinsandanother Sun 16-Oct-16 23:34:28

I agree with zzzzz on this. I don't typically. My Ds has a dx but no EHCP. The dx made no difference to the support he is getting at school. the school assess what is needed. If that works (and progress is made) great. But if not then (after school have tried everything they are supposed to/can) you can ask for an EHCP. Interestingly when my DS had no dx school were moving towards an EHCP. The time he acquired the dx coincided with a massive improvement in his engagement so school no longer feel an EHCP worth pursuing at present (and I think I agree, he is doing well as he is happy). That said OP press ahead for dx, what can it harm and if paed agrees it gives you a clear support to use against the "if you only socialised him a bit more" brigade etc. (Not that a dx makes much difference for my MIL, its still my fault but then most things are.)

DemonNameChanger Mon 17-Oct-16 17:07:20

Our senCo said having an asd diagnosis means higher banding on the ehcp funding, which of course funds more support and in our case access to a specific autism unit within the school.

PolterGoose Mon 17-Oct-16 17:18:58

cordelias it is really common for parents to have different views on this, for all sorts of reasons. Stigma around 'labelling' and disability in general is still rife. I would be approaching it from a perspective of how the assessments will help ds and help those who help him, try not to focus on named conditions, more about not identifying his needs and strengths.

I don't think it's helpful at all to make out that support is diagnosis based. Many many children with often the most severe disabilities have no named condition. Perpetuating the myth that support, EHCPs, interventions etc only come with diagnosis puts off a lot of parents getting their kid's needs met.

For autism alone average time from referral to diagnosis is 3 years, parents need to know that they don't need to wait to apply for an EHCP until diagnosis. Same with DLA, it's about need not diagnosis.

And for some services a diagnosis means an end to provision, e.g. it is very common for autistic kids to not get direct access to SALT for speech and language problems, yet a non-autistic kid with the same S&L problem will have access to SALT. Then there's diagnostic overshadowing, I won't got there...

PolterGoose Mon 17-Oct-16 17:19:54

or I won't go there blush

Somethinginthecordelias Thu 03-Nov-16 15:58:36

A small update to this - I just wanted to say thank you so much to Jason for putting the idea of hearing back into our heads. We decided to pay privately for an assessment and they found that DS has mild hearing loss on the left side and moderate hearing loss on the right side.

They've ruled out glue ear but other than that we aren't sure about the cause or if its something he's always had (despite passing the NHS checks!), we're still waiting for a referral from our GP to the NHS team. It was a big shock but it does make a lot of sense and hopefully now we've kick started it with the assessment we can get on with helping DS.

zzzzz Thu 03-Nov-16 17:04:34

Well done jason starstarstarstarstar

And well done Op for acting on itgrin

I love MNSN

PolterGoose Thu 03-Nov-16 17:19:22

What zzzzz said.

Hopefully you'll be able to support him better and find appropriate strategies.

Somethinginthecordelias Thu 03-Nov-16 19:57:37

We feel quite guilty because we were sure everything was okay after he'd passed all the checks - you believe the experts when they tell you there's no problem!

Hopefully when the referral comes through we might get some more answers. Neither of us know anything about hearing loss so we're still at the plunged in at the deep end stage a bit!

I'm honestly so grateful to all of you for your replies, as I say we'd kind of put a tick in the hearing check box until then. The nursery are already putting things in place to help DS, no more telling him off for ignoring instructions shouted out in tbe busy room (which breaks my heart to think of now), so its helped enormously in a very short time period.

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