Possible ASD/ sensory processing DD 10 help.

[anniee8ava]

Hello,

Background- mum of 2, dd 10, dd 4.5. Dd 10 has always had difficulties with food, she has a very restricted diet, I have always been told this will improve and it hasnt, tried the tough love approach and she just vomited so she deff cannot tolerate different foods. Clothing is better nowadays but I used to have to cut tags out and she would wear mainly dresses.

So, my husband has 10 years experience with caring for young autistic adults and has been saying for years first DD is on the spectrum. I have wanted to wait and see if she 'grows out' of certain things and not fully agreed.

However, recently its become more apparent to me. At school (prior to lockdown) she is very quiet, smiley, no behaviour problems. At home she can have a meltdown at the slightest thing and has for years thrown tantrums.

She thrives on routine, bed at a set time every night. I was sick of her moaning every day when I asked her to brush her teeth/wee/clothes so now she knows she needs to do all this by 10am and has made the time 9.30 and will do this unprompted at 9.30. She helps with the recycling on a Wednesday, if its getting full and I say on Monday shall we sort it? Shell have a meltdown that it isnt Wednesday.

Odd behaviours- she does this floating thing, she has never been able to just walk, always skipping or hoping, but this is when she holds her doll (usually upside down) and just moves a few steps in different directions mumbling to herself. She doesnt talk outloud properly only to mumble a sentence over and over or just hum. She has done this for years and I thought she was very creative but thought she would have grown out of this by now.

Hobbies- she loves her ipad/xbox/phone. We set limits as she would easily spend all day on them! When shes not on them she doesnt want to do anything, she prefers playing alone which she will just sit on the bed and stroke the cats for ages or do this floating thing. Rarely she will join in with her sister or me in games sometimes slime. (She used to do ballet for a few years then gym a few years) we are going to try horse riding when things 'open up' a bit more.

Do you think she sounds like shes on the ASD spectrum? Gross and fine motor skills she struggles with, cannot ride a bike, she will get her little sister to open things for her or put dolls clothes on and still struggles cutting food.

Lastly and maybe unrelated she seems to have developed tics, she squints her eyes a lot and more recently jerks her head back, like all the time.

Thanks for reading. I've got the GP phoning me back at 2pm but I feel like I will explain things and he will just fob me off? I hate 'adult' things like this. I am a health professional.mself and fine at work talking about things I know but this is not my remit...

Ana xx

I do think you have valid concerns and would certainly mention it to your GP. The concerns you list are all very commonly associated with autism and as they are all happening together it makes the 'big picture' concerning - sensitivities (you mentioned food and touch), masking (perfect behaviours at school/nursery but 'explode" when they get home - specially in girls, boys tend to it less), set routines (and extreme reactions to them changing), repetitive behaviours or stimming (you mentioned a few like humming, repetition of phrases, walking or skipping in odd set routines/patterns, even stroking the cat if it's what she prefers to do in a repetitive way and for prolonged periods of time, etc) and poor muscle tone or delayed motor skills (both gross and fine). Your husband would have had great insight in explaining some of her behaviours as working for over ten years with autistic individuals is actually more experience than many pediatricians would actually have....

Hello,

Thank you for replying. I pretty much got fobbed off by the GP he didnt want to refer me anywhere just signposted me to a website to have a look at and said talk to the school. So now I'm wondering if I should just leave it 5 weeks until the school go back and speak to them? But they dont have any concerns and shes not been there for 6 months so not sure what good that will be!

Hi, she sounds very much like my Dd, just turned 11 who finally got ASD diagnosis a few weeks ago.
First GP I saw when she was age 7 fobbed me off too, behaviours were all for home, suggested a parenting course .

At age 8 with things getting worse rather than improving I made an appointment with a different GP in the surgery and took my friend along with me for "back up" and to confirm the behaviours she had frequently witnessed in dd. I insisted that I wanted a camhs referral which they did then do.

I had a battle getting school to complete the forms as they just could not see it. But that is often the case with ASD girls, mask all day and explode at home. And unfortunately many teachers are just not clued up enough on ASD, or GPs for that matter.

If I was you I would make another appointment and take your husband with you too. Take a list of everything you've mentioned on here, they are all indicators of asd. When I finally got to camhs after a good few months wait for first appointment it was such a relief to have them tell me that it wasn't me, wasn't my parenting that was causing all dds behaviours!

Definitely see a different GP with your husband and take a list of everything you've both observed.

Sensory explanations for you, she may have more than you realise www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

The lack of knowledge about autism in professional circles is astounding, GPs and teachers often very wrongly fob parents off.
Girls present differently to boys and most of the tests for autism are based on the male presentation. I knew my DD was different to other kids from a very young age but it took me until she was 10 to get anyone to listen to me and get any referrals.

Stand firm, refuse to take no for an answer and be prepared to have to be 'that parent' whenever you need to be.

Often the hardest part about getting onto the diagnostic pathway is getting past other peoples' ignorance.

Be prepared to hear and counteract
'She can't be autistic because :-
She makes eye contact
Has friends
Is perfectly behaved at school so chooses to be badly behaved at home (!)
My child was exactly like that at her age
She needs firmer discipline
She needs to grow up
At her age, she shouldn't ...
School saying she's 'fine'
Grit your teeth and get past that and more and get her the assessment she needs to outline any support she should have.

Remember that kids with AN are often emotionally only around two thirds of their chronological age which is why they seem to be immature.

@anniee8ava There are some really good books on autism in girls. Just want to echo the advice you have had. Look up 'masking' in autism. Sorry you felt fobbed off by the GP.