DD's father is ableist

[MyopicBunny]

I am so, so sick of my daughter’s dad being ableist about autism. I’m autistic and I have two children already diagnosed.

My youngest daughter with new partner is nearly 4. She’s showing some ‘quirks’ at nursery and home but it’s really subtle. However, I feel like things could get worse for her if she’s misunderstood. Atm she doesn’t have an IPP because she can do everything she’s supposed to be able to for her age.

At the moment, the main things are that she won’t eat very much at all, won’t use the toilet (she asks to have a nappy on) and she’s extremely fussy about her clothes. She doesn’t like to get changed and worries about things like her colouring not being perfect and she’ll be in floods of tears if one of her toys falls over etc. She has a very advanced vocabulary and interest in words, numbers and shapes, planets etc. adults find her very cute to talk to. So she seems to have one of the autistic type of profiles, potentially.

Her dad doesn’t deny anything about her quirks and difficulties but he won’t admit them to her nursery manager, even though she can see them herself and in fact has a son who she thinks is like my daughter. And he calls autism ‘the A word’. It makes me angry because I feel like he’s insulting me as well. I feel like our daughter is going to internalise this ableism and for as long as she doesn’t have a diagnosis, he’s like ‘oh well it might not be that’.

Sorry, just venting. Does anyone else have this issue?

It sounds like DP is in denial, which isn’t uncommon.

It does sound like DD needs SEN support at nursery, though. DD clearly has needs that require support. Just because she is academically capable doesn’t mean it isn’t necessary.

Yes, I agree. It's a very small nursery so perhaps that's why they don't think she needs a TA but obviously, she may need one when she starts school. She gets very upset about certain things.

Unacceptable OP. I have no idea why he would be in denial when you're autistic and you have two kids with ASD. Did he think his NT genes would 'beat' your ND ones? He sounds quite immature and I wouldn't be comfortable with him not using the word autism and being confident and positive about it while recognising the challenges.

I wouldn't expect your dd to get any help in nursery, it's not at all unusual behaviour for a young child. I wouldn't expect anything at school either - when ds was diagnosed we were told he was going to struggle massively at Secondary school and he would need a lot put in place for him - then we were sent away with a book list. Nothing was ever put in place for him at school and it was extraordinarily difficult even to get him sat at the front of the class as he can't block out distractions - took 5 years in fact. Unless your daughters behaviour causes huge problems for the teacher and others I would say you should have very low expectations on the support she will get unfortunately.

I don't have low expectations because I'm willing to go to tribunal if necessary - I've had two successful tribunals against our council. At the same time, there are definitely some schools that are better for a child on the spectrum than others. I have a 14 year old who was happy at primary school but not at ms high school. She's found her own niche now.

But just because the LA doesn't offer you anything, doesn't mean you can't fight for it.

DD should have a SEN support plan. An IPP isn’t just about having a TA. And, in fact, without a statutory plan (e.g. EHCP in England, IDP in Wales) long term 1:1 it is unlikely. The nursery should be providing support at a SEN support level.

Denial is not uncommon, especially in fathers, sadly. You only have to read the SN boards to see that.

She doesn't need 1:1 at the moment. I think the fact that the nursery is small means that she hasn't needed one. I do trust the nursery manager - she has over 20 years experience.

I don't think that denial is ok though because ultimately it doesn't help her. Being on the spectrum isn't anything to be ashamed about and he knew I was autistic when we met.

I didn’t say DD needed a 1:1. I posted that DD should have a SEN support plan (whether they call it an IPP or something else) and nursery should be providing support at a SEN support level because an SEN support is about more than having a TA and academic ability. I was pointing out without a statutory plan having a 1:1 is unlikely anyway after you posted you didn’t think it was needed.

Neither did I post being in denial was in DD’s best interests. Obviously it is not. I was pointing out it is a stage many parents, particularly fathers, go through in response to you asking whether anyone else had this issue.

Yes, I understand this but what would you expect to have in an IPP at this stage? I have a meeting with the nursery manager next week.

DD clearly has sensory needs and toileting needs that need supporting. She also needs support with emotional regulation, worries and perfectionist tendencies.

If you suspect ASD then there will also be social communication and interaction needs that need support even if they are more subtle.

If the nursery need more advice on how to support DD they can ask the Area SENCO for advice.

Thank you. Do you know where I could get advice about the toileting? She is now my oldest child, still to be in nappies even though she’s the most able, cognitively. She got the hang of toilet training at 2, initially but then started holding her wees in and asking to have a nappy on. So it’s definitely behavioural and not that she’s physically unable or doesn’t understand.

The communication / interaction is something I’m going to ask about because it is quite subtle, as you say. She likes other children, will go up and introduce herself and ask them If they want to play. But I think her theory of mind is lacking because she will say to me ‘remember when I did x at nursery, today’. Not sure how developer TOM is in a 3 year old, usually though.

I suspect the most useful medical support at the moment would be a comprehensive sensory OT assessment. It may well be the toileting difficulties stem from sensory needs. As I am sure you know, sensory differences could also explain the eating difficulties and clothing problems. Unfortunately, many ICBs no longer commission sensory OT on the NHS and when they do, it is often limited. (If at a later date DD gets an EHCP or equivalent if not in England, sensory OT can be included in there.)

A referral would probably be rejected at 3, but once 4/5 a referral to the incontinence service could also help.

Even in NT children, TOM develops gradually and some will have quite a poor grasp that not everyone else has the same thoughts/beliefs etc. at 3.

That's helpful, thank you. I am going to contact the same place that did my diagnosis I think and see whether we can get her seen privately. Because the sensory problems are holding her back - there is no getting away from that. My diagnosis was NHS but they also take private referrals.

I've had yet another futile conversation with him about it, tonight. It is so frustrating. I was talking to him about ways that we could help dd and how it's important to get her on the wait list because it takes years and his response was

STOP TALKING ABOUT IT, YOU WILL MAKE IT WORSE
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