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
Here is what I hear is maybe your Most Pressing Concern: “All I want is to be taken seriously” Goodness, I feel that. It sounds to me like perhaps you should get fast tracked for a diagnosis! It also sounds like you could use a holiday. :)
This may sound strange, but, as I grow and change, my son manages to simply become the same. I don’t find myself teaching him, just sort of being and becoming.
However, maybe you’ve had a 3rd child who wishes they were an only child.
Just looking at this here’s a quick thought!
Could she draw a picture of a girl swinging on the chair and then add a big “Please Do Not” Or something with a Kind No, rather than a Cruel No (if that makes sense?) I’m more happy to comply when I feel like someone (even myself) cares about my well being rather than is simply rendering yet another command.
Then allow her to tape it up somewhere near the chair until she feels she doesn’t need it any more. This may be useful for other things: Draw one for both sides of the stairs. If it’s a life-saving effort, having a few pictures around the house will help you! Drawing her own memes and putting them where she wants to, may also give her a small introduction to self-regulation.
She’ll need to be reminded this is for her to control herself and not others. We all need to remember this! In my family it is that we remind each other we analyse and critically evaluate THINGS and not People. The NTs all seem to crumble under our analysations and often are too quick to take offence.
Danger awareness is quite massive. My mother treated everything with such intensity and chaos I didn’t know what was up or down. But I believe I got this ASD-ness from my grandmother who would remind us to do one thing at a time or allow her finish a thing and then she would give us full attention. Our time limit was fluid, it was when she put dinner in the oven or when she finished the dishes. We were also offered the ability to help if we wanted to simply be with her. Giving us options: you can wait or help me, made me feel included, wanted. It was easy to let her be.
She was also light-hearted and logical about most things but when it came to things of grave importance she was suddenly serious. I took this and applied it to my own parenting. This prioritising helped him take caution when I would actually get upset.
Children are desperate to trust and feel safe in their surroundings. Safety isn't always about physical harm. It's usually more about reliability, feeling heard and accepted. From what it sounds like, she's incredibly intelligent, hyper-aware even. From when my son was about 2 until he was in his teens, I had embarked on a massive journey of personal growth: a little at a time. As I changed and acquired new ethics, principles, or just learned new ways of affirming others (including myself) and the world around, he was watching and applying these new habits. It was a massive undertaking but well worth the journey. I went from feeling unheard and overlooked and not taken seriously to having language tools to speak to others in a way they wanted to listen to or articulating a thing (after enough thought) with a much better clarity. Self-growth as a mother always spills on to our children :)
Fast tracked for diagnosis... somebody would have to see what I see for that to happen! I had the same problem with my eldest daughter. I first saw signs when she was around age 2 bit whenever I said anything to anyone it was "oh she'll grow out of it" or "all kids do that" she had sleep therapy at 2 & behaviour therapy at 2 & a half...nothing worked. Her dad said it was my fault she was the was she was because of my "s****y parenting & being too soft & letting her get away with everything" he's quite authoritarian & tried to discipline her but it just didn't work. Maybe that's why I didn't get the "bad behaviour" because I refused to use time out or punish her for things I could clearly tell were out of her control. She didn't get a diagnosis til she was 11 & thing went t**s up when she started secondary school. Then people saw what I saw & agreed that maybe she did in fact have ASD after all! Same thing happened with my son. He didn't talk til he was 3 & was told "boys are lazy" he didn't ever have any meaningful interaction with anyone other than me, again "it's because he's a mummy's boy & you mollycoddle him" he finally got a diagnosis age 8 when his teacher asked me if I'd considered the possibility! Finally! I guess I'm just really worried about history repeating itself and my daughter not being given the support she needs before she reaches crisis point like my eldest daughter did, just because she can supposedly interact with other children...it is all really frustrating & I'm questioning myself like...is it me? Am I imagining it? Am I MAKING her like it? I don't believe in my heart that I am but there's always that niggle of self doubt.
Holiday...mmmm...I wish. Holidays are a no go as the children really struggled with the last few due to not liking new places, new smells, change of routine etc so we just do day trips now as it's a lot less stressful for them. I'll take a nice break when they're all grown up & moved on.
I really like the drawing idea, thanks. I'll try that.
Your grandmother sounds like a lovely person as do you. Thankyou for replying.