DM and sister not accepting of ASD referral

[kcchiefette]

I am a mum to a 7 year old with ASD and on pathway to ADHD also.

Recently, my DS seen her health visitor in a routine appointment for my DN. DN is 4 years old. This appointment led to a referral to the ASD services and DS and my DM are not too happy about it. I am a bit offended as to why.

I have suspected for a while that DN was ASD but kept my mouth shut due to not being a professional.

DN is a "shrinking violet" so to speak. She has severe speech delay and she is very aware of this also, so stays mute most the time. She is horrendously shy and has struggled to make friends at nursery. I have noticed that she doesnt make eye contact.

I have an ASD child myself, I have friends with ASD and ADHD for many years and numerous ex partners with ASD. I seem to be magnetic for ND people as I am the empathetic type they are drawn to. Ive had a lot of training and support from ASD services and some personal experience through seeing my friends etc. I am fully aware that it presents differently in each person.

DS and DM are furious. They seem to think its a speech delay only and that she "definitely doesn't have ASD as she is nothing like" my son. I have tried explaining to them about how it present differently, providing them links and materials they can read. To me, DN relates to a lot of it, but they are dismissive of it.

Its led to me feeling a little offended as to why they are taking such a negative stance, and also defensive of my DN as if she needs help and support they dont seem to be supportive of this.

Do I let the referral play out or is there another way I can try to get them to listen?

You can lead the horse to water but you can’t make it drink 🤷‍♀️

Some people don’t like having their children assessed for ASD as they feel it gives them a “label”.

I would point out to your sister and mother that having diagnosis is actually beneficial to a child as it allows them to access extra support.

Then leave it.

Girls present differently to boys and I think from what you've said here the HV has valid reasons to be concerned. ASD weaves through families and if this leads to a diagnosis she'll get the right support through school from an early age.

It's very awkward isn't it. My niece was diagnosed recently aged 10, she presented like your niece but without speech delay ( selective mutism though). I've thought she might be ASD since she was a baby! My parents still voice doubts about it which annoys me as my three boys are all ND including one with an ASD dx. I feel a bit offended on behalf of them and also myself as my "experience" doesn't seem to count! My parents are retired medical people so that doesn't help...

Any chance they are ND so they see some of the traits as normal because to them it is?

Keep out of it, it is none of your business, and as you say, you are not a professional.

This.

Well honestly as long as they're bringing the child up right etc then not something to worry about.
You can still deal with the child in the correct way without thinking they're autistic etc
Might be that if she is autistic they'll see it eventually and it'll sort itself out anyway

I can understand why you are feeling hurt, OP, but it's also natural for them to feel defensive and prickly. It is very common for parents / grandparents to be in denial for a while when someone first mentions that their child may be ND. It's not about your child, it's just that they're struggling to process the situation.

I agree.

You appear to want the child to have a diagnosis.

In the nicest possible way op don’t be offended- you’ve had a chance to get used to the diagnosis, they’re at the stage you were at when you realised things might go a different way to how you expected. I don’t think they’ll listen to you because they’re going to think you’re engrained if you know what I mean, and that you’re putting out what you’ve been living with onto them. My db is autistic and when I said I was thinking of looking into diagnosis of that and adhd I was told that I’d gone to too many talks etc and was seeing things that weren’t there.

I’ve been concerned about friend’s dc and what I’ve done is spoken about the different services that the diagnosis unlocked. Keep the conversation to your own child so you don’t trigger the panic.

We were at OT the other day and I discovered that ….
Speech therapy is really helping…
He’s on a wait list for ….
Im trying to encourage xxx because the physiotherapist said…
etc

Have you considered that you might be ND yourself op? Empathy is a strong indicator and your friendship circle is another.

It’s not easy to shift from the “something wrong” paradigm to “something different”. It’s hard not to take it personally though.

I see some traits of ASD in all 3 of my sisters.

Even myself, I didnt realise how much I related to until filling out paperwork etc for my chile which in turn led to me being referred for ADHD myself and explained a lot about my past struggles I had as a teen and young adult. I still havent been seen yet though, so not too sure on myself.

My family often make jokes about how "odd" we all are, so they may be somewhat aware.

Sounds like she may have selective mutism as well as/ instead of autism?

https://www.selectivemutism.org.uk/

If so, please persuade her mum to get a SM trained speech therapist involved asap. SM is really crippling if left untreated.

Just be quietly supportive, a lot of parents struggle with a ND diagnosis and it maybe easier for advice to come from professionals.

Yes, I think she has also

She had group speech therapy but it didnt help as she didnt want to talk or participate with others in the group

Group speech therapy will never be appropriate for a child with SM

You need a trained speech therapist or educational psychologist.

Yep I have explained that going to an ASD services may help to highlight this and get further help for speech therapy even if ASD isnt present

Just worried that they wont cooperate fully with the paperwork/appointments etc that will come

What do think they might do?

Sorry to bang on, but the SM needs treating separate from and more urgently than any autism.
An autism service is unlikely to be the right place to find SM support.
There is a very active SMiRA parents' group on Facebook where people can get advice and support and free downloadables.

Trust me, don't wait 2 years for an autism appointment to find they know nothing about SM and it's now entrenched anyway.
I did this and I have a 23 year old unable to work or live independently. His autism is much less of a barrier than his SM.

YANBU to be frustrated and insulted, but your sister in particular needs to process this at her own speed.

I'd back off so that she can still come to you when she's ready.

YANBU but don’t try to make them listen, they won’t. Talk them where appropriate (e.g if it comes up) snd highlight the benefits a diagnosis and support has given your child.

I would bet money my nephew has ADHD, I have ADHD and I can see it in him extremely clearly. My brother and his wife didn’t want him labelled so haven’t had him assessed, they came close when he was suspended from his second primary school but didn’t go through with it in the end.

As much as I would love to push the issue, because I care about him and I think his life is negatively impacted by the lack of support he gets, I don’t. I just talk about my own experience, encourage them to think about how hard it is for him and emphasise the importance of helping him develop coping strategies. They’re very open to strategies now, just not diagnosis, and that delivers more for my nephew than a big row.

You are of the camp that see ND as a gift/superpower/something that makes your kid who he is/just the same just a bit different.

Others see it as bloody hard work and not the idea of parenting that they wanted when they had kids. They feel scared. They feel short changed. They think ‘why me?’. They feel envious when they see NT families. Your mum and sister are in that camp.