Floored by DD referral for ASD diagnosis

[SexNamesRFab]

I posted this in response to someone else, then realised I probably need my own thread.... As my mind is spinning right now and it would be great to talk.

I have two Dds (11yo and 8yo) are bright and social - but also ‘difficult to parent’. We’ve been in regular contact with SENCO and seeing a private family therapist for the last year (suggested by school as DD2 can act up and lash out).

School have now decided it’s time to refer DD2 to a SALT and paediatrician for an ASD diagnosis. When I listened to their reasoning, I said but DD1 is the same if not worse. They said let’s refer her too then!

I was in shock, I should have expected it but it felt like a bombshell. My usually supportive DH seems angry and in denial. He didn’t come to the meeting this week. In fact he stopped coming to therapy and school meetings as he found it too upsetting and decided and ‘there was no point’. It’s very possible he is ASD too.

All this is further complicated by the therapist suggesting I have PTSD due to trauma (x2 fires and some sibling violence). So apparently my climbing the walls looking for definite answers and desperately researching ways to help both DDs is a sign of my own mental distress. What a mess!

I’m think I just need to get this out there. On the surface I have two bright, Happy healthy girls who are achieving above or at expected level across all subjects in school. But.....

Both are terrible at the art of conversation (mainly when talking to me or each other). Can’t bear being interrupted, spoken over or even asked a question about what they’re talking about.

Both Never sleeps and never have (wake up in night and comes into me, can’t relax or switch off without constant reassurance - eg listening to meditation or podcast with me, being cuddled, rubbed or patted)

D1 11yo

⁃	Picky eater (all food must be separate and ideally beige)
⁃	Sensory issues (misophonia)
⁃	Special interest (horses - but that’s a positive thing)
⁃	Aces non verbal reasoning, struggles with verbal 
⁃	Anxiety, presents as anger (triggers inc fear of being late, but she’s hopeless at organising herself or getting ready on time)
⁃	Hungry or tired, presents as anger 
⁃	Social issues (got kicked out of a trio of girls in year 4 and has since really struggled to make close friends, she is around others but v rarely get invited to play dates or parties - heartbreaking)
⁃	Lacks empathy and sometimes sympathy (eg if friend was ill and had to cancel plans, she’d get angry with them)
⁃	Sees people disagreeing with her opinions as them ‘being rude’ 
⁃	Has to be threatened into self care (won’t bathe, brush teeth or wear deodorant)

DD2 8yo
⁃ Sensory issues - Can’t wear any kind of cream or makeup, can’t bear certain fabrics, loves the feel of towelling (sleeps naked wrapped in towels), can’t bear tights or trousers and will only wear knickers several sizes too big
⁃ Can’t bear certain noises, needs absolute quiet to concentrate, finds classroom noises difficult and overwhelming
⁃ Self calms with repeated behaviour (lining up or arranging small world toys) - gets very stressed and can lash out if this is interrupted (eg if another child wants to join in and play/touch/move the toys)
⁃ Told me she also likes to touch things in a pattern to feel ok (2 taps on the bookshelf, 2 taps on the door knob type behaviour)
⁃ Sometimes appears very stressed if I am telling an anecdote and she can’t understand the peoples motivations, asks me to repeat it over and over
⁃ Loves routine (eg eating the same things at the same time of day, doing things in a certain order)
⁃ Is very tidy and can’t bear dirty things (eg she can’t put toothpaste on her own toothbrush as tube is too messy with dried toothpaste)
⁃ Gets stuck emotionally (eg there’s a girl in her class who’s known to say and do mean things to everyone, all her friends have distanced herself from her - but DD is obsessed with their relationship - talking about it at home constantly and causing issues in the classroom)
⁃ Can get violent (mainly with me and her sister) and at school gets in lots of trouble for swearing and being rude
⁃ Is very gifted musically, but has huge anxiety about performing

They are both in the spectrum, aren’t they?

I have a son with autism and a lot of what you say is ringing a lot of bells. So yes, I think I agree with you.

It sounds as though the school is very supportive though, which is good.

Obviously none of us can diagnose over the internet, but , from what you have posted, I am surprised no-one has suggested an assessment earlier on.

Thank you for replying. I think it has never been picked up because, on the surface, they are capable (achieving as expected at school) and we have slowly adjusted our lives to accommodate their difficulties (eg I shop online and would never dream of taking them into a supermarket for the weekly shop as it would be guaranteed meltdown). My mum looks after them fairly regularly but admits she can't cope with them often.

To be fair I remember mentioning it to nursery as a possibility for DD2 plus warning her reception teacher she was liable to meltdowns and lashing out if her small world play was interrupted.

I still wonder if I'm over egging it to call it ASD. I have friends with kids who've been diagnosed and feel I would be embarrassed to claim my DDs have SEN/ASD, as their kids' challenges are much more apparent than mine. Like moaning about a first world problem IYKWIM??

I don't think you are over egging it. Everyone's Autism is different. And just because yours doesn't look like some else doesn't make it any less real. It does sound like they are both good candidates for a proper assessment. You are lucky to have a school which cares enough to refer them. I hope your DH comes around and finds his supportive self.

I have 2 dc who are autistic- they are very different to eachother but both have the same diagnosis on paper. My dd11 shares many traits with your eldest and her diagnosis helps her try to make sense of some of her emotions which can only be a good thing especially now she’s at secondary school. She too is bright and is enjoying the academic side of school but still struggles with everything else even more than in primary. Her diagnosis has been useful.
You don’t need to share any diagnoses with friends if you don’t want to - I’m sure they wouldn’t force you into a game of SEN top trumps ;-)

I totally recognise the fear that we're 'making a fuss'! I have 2 daughters, 11 and 9, both with ASD. Both are academically capable, relatively sociable, able to be beautifully behaved and charming as well as paralysed by anxiety and trapped in enormous meltdowns.
My dh is also fairly spectrum-ish, so I do sometimes feel like the "only neurotypical in the village"!
But you know what, their diagnoses have only ever had a positive impact on the way we live our lives. Knowing why one needs near-total silence when she's stressed while the other needs to bounce and scream, preferably at the same time, has made it much easier to plan ahead, and easier to explain the apparent chaos to others.
The diagnosis process was hard, but I'm glad I know. As I see it, they already had all the challenges, the only thing that changed is that I have a single word to sum it all up now!
Feel free to pm me if I can help x
autism mums unite!

@ShSpecialFriends I had to read your post several times over as I wasn't sure if I'd written it

Please do not fear a diagnosis of ASD. My DD was diagnosed at age 17 (we went privately to avoid a 2 year NHS wait) and we both say if only she had the diagnosis before secondary school, life may have been significantly different. We feel we missed out on advice, information and support that would have been so valuable and if school and other kids had known she had ASD she might have avoided the nasty bullying which lead to mental health issues. She was bright, engaging, hardworking but prone to meltdowns, fixed thinking and difficulty understanding teenage social interaction.Now at a high ranking Uni she is thriving in an environment that is supportive, accepts her as she is, and has friends who are kind, caring and inclusive. She is still learning what makes her tick and how ASD influences her daily functioning but its getting better for all of us.

@ShSpecialFriends Can I ask how you began to suspect how your DDs might have (what do I even say? Austism? Traits of ASD? Be on the spectrum? Everything sounds so black & white).

Those of you who say your DCs diagnosis helps them understand their differences - how do you even start to talk to your DC about ASD? I bought a book (camouflage by dr Sarah bargiela - like a graphic novel but non fiction - it's good) hoping it mark spark conversation with DD11 but she flat out refused to engage. She's the same with books about puberty or managing relationships, she has no desire (ability?) for self reflection. Yet she loves other kinds of non fiction/ science type books!

@SexNamesRFab my DD was older than your DC but after years of feeling that she was wrong which made her feel so bad about herself, finding out she had ASD and she wasn’t wrong but just different, helped her understand how she fitted into the world or the world fitter round her. We often compare it with a physical disability. You wouldn’t expect a wheelchair user to struggle up a set of steps. Why would my DD expect to be able to mingle comfortably in a noisy busy nightclub or pub. There are good books. The one I read was women and girls with autism spectrum disorder by Sarah Hendrickx. Have you seen the latest Pixar short film Float? Maybe that’s a good starting point for discussion with your DDs?

I just say they have autism.
My older one was diagnosed a while ago now, in Y1... I started to realise she was different in Reception: she was selectively mute quite a lot of the time, struggled enormously with change/unpredictability, never sought help/comfort from grown-ups, was very focussed on one topic at a time... Which happened to be Death when she started school, which was interesting! "When will you die?" Was often her first question to new people which was slightly alarming...
My younger one, weirdly, took me longer to twig! She's just so different. First I thought she had the terrible twos, then I thought she hated me, then I thought it was a reaction to her sister's autism. It was only when she developed her own 'special interest' (wheelchairs!) That it dawned on me what might be going on!

Both of mine actively avoid answering questions about their internal worlds, but will usually listen to me talk, if I catch them at the right time. So I read books with them, and explained that the way their brains work is called Autism, and what that looks like for them.
My younger one was much more aware of the assessment process, as she was in y4, so she understood that she was meeting some special doctors to find out more about how her brain worked. They both really like programmes like My Life on CBBC, so have both watched various episodes about children who are different in various ways. That helped.