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
That's what I intend on doing next but I came here first one to vent & two for some reassurance & some validity I guess. People here have actual real life knowledge of Autism either through having loved ones with Autism or having it themselves & therefore know better all the "quirks" & behaviours of Autism rather than what's been learnt from a book. I'm not saying learning from reading isn't valid by any means as that's how I've learned most of what I know but actually living it you get to know things about it that isn't always text book stuff but still very much a common thing if you know what I mean
Bless you. Can you go back to your GP and ask for a second opinion?
Hi Dawn, Thankyou so much for reading & replying! I have researched the *** off Autism & related conditions as I wanted to help my children any way I could by knowing as much as possible about it. Since having the children & realising I likely have Autism myself, it has since become my special interest & that's why I don't think I'm wrong as everything I've read & indeed as you pointed out everything I've lived seems to point to Autism & maybe something else. Have considered ADHD too along with sensory processing issues. My son has ADD & I have other family members with ADHD.
I just can't understand why they won't assess her based on clear evidence rather than a judgement from 7 weeks observation among 30 other children 5 hours a day for 4 days a week! They say she "plays fine" They see her playing with the other children, what they haven't taken the time to do is look at HOW she plays with them. It's very her way or no way. She likes to be in control. She won't go up to another child & play their game. Child will say you're the baby & I'm the mum, She'll say no, I'm the mum & I'm coming to the adoption centre...pretend this or pretend that. She has to take over. Not only that she isn't playing using her imagination she is literally acting out a video she's watched of another child playing that particular. I can't seem to get this through to anyone! So frustrating!
Hi
I wish I had advice to offer. Perhaps some parents here will. I can't believe they aren't assessing this. If it isn't ASD, there's something else. Does she really play with other children just fine?
I hope you manage to get her assessed somehow.
Yes, there are a lot of good you tube video explaining the difference between tantrum and meltdown. All kids will have a tantrum if they don't get what they want. It's goal orientated. Don't give in and they grow out of it. Meltdown...is some other overload and is not in anyway 'naughty' behaviour because they aren't trying to achieve anything by it.
...oh I see, when I read to the end, you HAVE experience of ASD kids by the bucket full by the sounds of it...You know more than me. Can't believe they aren't taking you more seriously given the family history.
HumbleBumble said: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.