Published on 12, July, 2020
Hi everyone!
This is long. I am sorry in advance.
So, currently my 5 year old daughter is undiagnosed but I very strongly believe she has Autism. I self referred her, filled in the questionnaires & the school did their questionnaire. The autism team has said that they won't consider her for referral as school have said she can communicate efficiently & plays with other children fine. I've since spoken to the clinician that refused the referral to try & convince her to assess my daughter & she said she can't as she doesn't meet the full criteria! She said to come back in a year if there's no improvement AND she has problems at school! Now I'm really angry & frustrated. We've been in lockdown for best part of a year & daughter has done roughly around 19 weeks of school with a 6 month gap then a 3 month gap due to lockdowns since starting 18 months ago. The teacher that filled in the questionnaires had only known her for 7 weeks so I am really struggling to understand how in the world the clinician can deny her the chance to be assessed based off what someone who has only known her for a short space of time says over the abundance of information that I have given that in my mind is crystal clear points to autism?! Sorry if I'm waffling, I'm angry & tired. Can somebody please tell me whether I am completely barking up the wrong tree with thinking it's Autism?!
Reasons I think it's Autism:
She was early in a lot of things, could sit at 4 months, walk by 7 months, hold a full blown conversation by 11 months, count to 20 by 14 months...BUT she then stopped doing all those things. Except talking...the girl could talk the hind legs off a donkey my dad says! She talks far too much & doesn't know when to stop & can't seem to stop even when asked! She will always change the subject to talk about what she wants to talk about & looks at you blankly if you try talking about something else, cuts people off mid conversation & is generally quite rude. Her speech has always been very good & she has always used words far more advanced than her age. She talks like an adult at times & doesn't seem to realise that there is a difference between adults & children.
She is quite quick to learn new things e.g reading, maths but she forgets them just as quickly. It's like it just doesn't sink in so one day she can read an entire book but give it a few days & the ability to read so well dissapears.
Not sinking in...I can tell her 20 times in a row not to swing on the kitchen chair but she'll still swing on it & then I say I've literally just asked you not to do that & she says "oh yeh, I forgot" then less than 5 minutes later she's swinging again! That applies to a wide range of situations not just the chair.
She has little to no danger awareness. Will run straight across the road, climbs on everything, walks down the stairs backwards or jumps or runs in places she really shouldn't like by a river or a busy road.
She has massive tantrums/meltdowns. Sometimes it's if she can't get her own way with something like wanting an ice cream & I've said no. Sometimes it's seemingly out of the blue but I've realised it can be because something different has happened that day out of what would normally happen. For example we had family round to the garden & she was fine but later that day had a 3 hour tantrum/meltdown starting because she her buttons came undone! She goes from happy to angry & upset so quickly & when she's passed the point of no return with it 3 hour meltdowns are inevitable.
Her first tantrum was around 8 months old & she was throwing herself around & headbutting the floor for 3 hours. I tried all sorts to get her out of it but nothing would help, I ended up taking all the sofa cushions off & putting her on those so she didn't injure herself & just let it carry on until she was done. Tantrums/meltdowns/screaming happens at least 3 times a day & can be triggered by anything from not letting her have a sweet to something as random as the washing machine being on. She throws herself to floor & will scream & scream to the point of almost tearing her voicebox, she will hit herself, pinch herself, headbutt the wall or whatever is nearest to her, she pulls her hair out. She trashes the house, breaks her toys. Usually her favourite toy or a drawing she has done & then that just makes the whole thing worse & last longer because she gets angry at herself that she got angry & broken something she treasures. When she's like that she really doesn't realise what she's doing. Sometimes though she will blame me & say it's my fault because I would do whatever it was she'd asked, give her an ice cream or play with her because I'm in the middle of washing up or something. She has zero emotional regulation at all. She also doesn't seem to understand that I can't do something there & then just because she wants me to. If I'm doing dinner or washing up or on the phone & she asks me to do something, the fact that I can't right now is also inevitably going to cause her to meltdown. I've tried saying I can't right now because I'm doing this & can repeat that over & over for sometimes half hour or more but she will keep on & on & on until she bursts with rage that I'm not doing what she wants.
She collects hair from my hairbrush as she likes the feel of it. She plays with my hair a lot & sometimes the only way to help her calm down is to offer her my hair. She also hoards rubbish i.e crisp packets, sweet wrappers, yoghurt pot etc, she won't throw it in the bin because it's hers! She also collects stones, leaves, bits of paper, l.o.l dolls is the most "normal" collection of anything she has. She plays with them but doesn't so much play with them by using her imagination, mostly just acts out videos she's watched on YouTube or lines them up & undresses & dresses them, she always plays with any toys she has in the same way & plays the same games over & over. Example sweet shop, or ice cream van, school...it's just acting out what she's seen rather than proper imaginative play.
Very repetitive in what she does whether that's playing with the same toy the same way every time or singing the same song over & over. We have had thousands of renditions of let it go over the last 4 years all very much in tune...she gets very annoyed if people sing the wrong notes! She repeats random phrases often from films/YouTube videos, she'll blurt them out randomly when there's nothing even remotely related to the phrase going on for example we can be eating dinner & she'll just randomly shout out "I'm Barry Scott"
She still has a dummy.
Sensory issues...I can't use the washing machine, tumble drier, hair drier, hoover, kettle anything like that as it sets her off. She says she doesn't like it & it hurts her ears. She is very sensitive to sound & doesn't cope well when there are lots of different noises or noises are too loud. She doesn't like smells, I can't spray perfume or deodorant, moans about the toilet cleaner, will go absolutely berserk if she even sees a fried egg...even worse if she smells it! She doesn't like the look of eggs. She doesn't like hugs because they hurt but does like cuddles on her terms. Very picky eater & likes to eat the same foods every day. Doesn't drink a lot as she doesn't seem to ever get thirsty.
She likes to touch everything.
She loves to spin.
She loves to be funny, always making up her own jokes (they are never funny!)
She takes everything literally. If I say in a minute she'll count to 60 & then get annoyed because I shouldn't have said in a minute if it wasn't going to be a literal minute. We now have "in a mummy minute" which she's beginning to understand means at some point in the near future.
She doesn't like going outside much, I asked her why & she said "the traffic is too noisy & too fast & you just never know when you're gonna hear a car beeping or a siren or feel the wind or hear a buzz that might be a bee or..." Seems like a lot of sensory issues there coupled with the unpredictability of noises outdoors
She won't (or can't...haven't figured this one out) do anything for herself. She won't get herself dressed, won't go to the toilet by herself, won't brush her own teeth...she wants me to do everything for her or with her. She won't even go upstairs by herself. I still have to lay next to her when she falls asleep & she gets up & gets in my bed almost every night. She is a terrible sleeper, often still awake until 11pm as she's not tired but awake again by 7am!
She really doesn't like red lights!
She's oddly interested in death. She has said she wants to die to see what being dead is like. She wants to go for a day out to the graveyard. She always talks about the death of her grandad, Nan's dog, uncle, but there's no emotion attached to it, it's very matter of fact.
She doesn't have a filter & says inappropriate things in inappropriate places. She has no problem saying "you're fat" to someone who is large as she says "well she is" when asked why did you say that, that's rude?!
She doesn't like to be talked about. Not only in a way where you would say "her behaviour is horrid today" but I can't even praise her or say she was playing with her teddies...I literally can not talk about her at all because she gets really angry.
She notices details in stuff like things look like faces or repeating patterns.
It's pretty much like she's stuck at age 2 with her understanding & emotional responses & I just have no idea how to help her.
There are many more examples of why but we'd be here for a longggg time & I already feel this may have been too long winded...sorry again for going into such detail.
My older children have Autism diagnosis. 13yr old girl-Aspergers & 11yr old son - Autism. We have other members of the family with Autism on both sides also so I feel that it's highly likely given the family prevalence that it is Autism. I also believe that I am Autistic but am not wishing to persue a diagnosis for myself at this current time.
What does everyone else think? Feel free to tell me I'm wrong if you think I'm wrong. I just want to know what's going on with her so I can get the right support & help her with her struggles.
Thankyou in advance to all those who took the time to read this x
Hi
From what you say, she does sound to be on the spectrum- but I'm no doctor.
She sounds 'empty' and desperate for knowledge and detailed guidance to build data and confidence. The 'not working things out' is very common - she probably needs explicit programming of routines and expected behaviours and careful coaching to remind her - repeatedly - until it becomes second nature.
You have to understand that we are usually grossly overstimulated all the time - so the brain is going a million miles an hour all the time - small details to remember drop off the edges until they rise up the priority list of actions.
Repeating things is a comfort - it's learning a skill or sounds that are pleasing and just slot nicely into a brain pattern - it feels good every time it happens. Same with touching things - the craving for information and sensation. Same with toys - exploratory sensation 'delight' toys are more fun than an inanimate doll. A doll is the same as a brick or lump of wood.
She's copying trying to see if there is a trick she's missing and also learning to mimic to hide in plain sight. Girls get very good at mimicking so often miss out on a diagnosis - they are capable of fooling the assessor in the short term.
We are programmed from year dot to be honest and truthful - the social filter makes no logical sense - you want us to randomly lie? Why would we do this?. Honesty and bluntness is the result.
She's aware that you don't approve of some of her behaviours - but the line she crosses is variable and forever changing - if she considers that she's been good, it's extremely annoying to be destabilised with arbitrary rules that make no sense.
We crave stability, repeatability and predictability - anything chaotic is too hard to process - noises, actions, bright lights etc. Unfortunately, we want everything to be controlled and zero stress - and children learn to control their parents to get their own way - but that will mean she will use that control to retreat from life.
Coping strategies are more useful for her in the long term as her life will become more complicated as she gets older and she could eventually become an accidental hermit as the end result of avoiding all stress.
Thanks Plastic,
I try to keep noise in the house to a minimum as I am aware that she gets very overstimulated & frustrated when there is lots of noise. My other daughter is the same so I have plenty of experience making it comfortable noise wise. My son on the other hand likes noises & likes to bang things! That causes a few issues when the girls are struggling with noise! I don't cope well with all the different noises as I seem to hear EVERYTHING. The tap dripping, the cars going by outside, the cat walking across the floor, the hum of the fridge motor along with the constant buzz in my own head all at the same time..it completely overwhelms me & my ability to function goes to pretty much zero so I generally tend to wear headphones at a low level to block it all out. My eldest daughter does the same. I don't feel that's an option for her though as noise is in issue. I've tried ear defenders & most of the time she manages them well & they help tremendously but sometimes them being on her head causes her stress as she feels in her words "as though they're trying to squeeze her brain out" also the school will not allow her to use them as they don't believe she needs them so that causes problems. I've tried explaining to them that she needs them because she is getting overstimulated by the noise & then melting down when she gets home but I think they think I'm exaggerating the severity of the situation. I feel like everyone thinks that I'm exaggerating it all to be honest. All I want is to be taken seriously & for her to get the help that she is entitled to. I'm also worried that by helping her too much myself she will become so able to manage that she doesn't get diagnosed at all & will then struggle with support later should she need it! It's really stressing me! I've tried social stories but she sees them as just that...stories. I've tried visual timetables but then when something doesn't go exactly how it is in the plan, like someone turns up to the house without an invite (my pet peev) or we get stuck in traffic so don't get home bang on 4 o'clock it causes even more issues so we don't do that anymore. I really don't know how to help her manage it all. I'm currently doing a support workshop but even they are just covering things I already know, offering advice on managing behaviours that I've already tried...any advice from anyone is more than welcomed
I find i can't cope with multiple or staccato sounds simultaneously - I can feel the hairs on my neck prickling and my brain overloading - I use those foam ear-plugs - there's lots of different types - some are smooth foam with a plastic head-band, others are squashed up and expand in your ears to stay in place- they can feel strange initially but you forget about them after a few minutes. I don't like the squeeze of ear-defenders - also, my ear is just bigger than the cup size so it's a horrible feeling..
Routines and predictions are important - unexplained delays or changes are unbelievably and irrationally annoying. I *hate* getting stuck in traffic.
A lot of my issues are external cyclical noises - dogs barking, someone else's music, motor bikes - all the out-of-control things that can impinge on my concentration or task-focus.
Some voices fry my brain - like most tv presenters - they have a beat frequency that is too high - about 150 bpm - it's too fast and it makes me jittery.
I've always talked fast too & far tooo much, everyone is always telling me, that's how I know! My song they used to sing me when I was a child was yakety yak by Chas & Dave I have one child who talks too much, one child that barely talks at all & one child that talks as though he is either doing a drama performance or a giving a lecture!