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7yo old dd - possible ASD? Is it worth pursuing?

11 replies

Snowcaps · 17/06/2021 20:56

Hi everyone, I didn't realise this board was here and have been signposted from a post I made on the child behaviour board about concerns for my 7 year old dd. A couple of posters said I should post here as they thought it might be worth looking in to an ASD diagnosis.

I'm really sorry if this is very long but I just want to give a good outline of my concerns. I'm going to bullet point everything so it's easier to read.

  • She was a late walker (20 months) and always seemed behind with physical skills compared to her peers. She never climbed things and even since being very small was very unsure about feeling unsteady on her feet. For example I took her to soft play as a toddler and she hated the feeling of the soft floor and wouldn't go near any of the soft play equipment - I actually took her to the GP just before she started walking as I had concerns about this, and she also always sat in the W shape, although she doesn't do that as much any more. GP wasn't concerned and said it was too early to look in to anything so I left it.
  • She has never been a good sleeper. It's quite rare that she sleeps through the night. Most nights she wakes me up once or twice, but we often get bad nights where it's multiple times and she can't get back to sleep by herself. We also have to sit with her while she goes to sleep at bedtime.
  • Following on from being cautious - she is still like this now. She will not play on swings at the park, climbing frame etc. She is getting slightly better with age and will play on small slides etc, and will now walk on a small wall holding hands but she holds on for dear life as she's very scared.
  • Terrified of escalators and very wary of stairs. She absolutely will not go on an escalator and gets in a blind panic if we approach one
  • Has always been very scared of water. Hated water on her head as a baby and got worse as she got older. Managed to get in to 1-1 swimming lessons a couple of years ago and making slow progress with a lot of persuasion. Her first two lessons she wouldn't even go in the same room the pool was in (it's a small raised spa pool) and she screamed and cried the whole lesson. Took lots of talking around to get her to try it. She does love her swimming lessons now but had a situation yesterday where she's panicking about getting water up her nose/won't try a nose clip because she's scared and got herself in to a right state which took a long time to get her to calm down.
  • Extremely anxious. She worries about anything and everything and will play over things in her head/talk out loud because she's so worried. I give her lots of logical explanations and reassurance but it doesn't do much to help. It was very bad over lockdown and although she's fine when she gets to school, she has had lots of anxious feelings about going back to school. I think possibly the anticipation of going back? Had same worries going back after half term. Lots of tummy aches etc.
  • Finding school history topics very hard to deal with. They had a topic about the great fire of London and we had constant anxiety around fire for a long time. Nightmares and trouble sleeping. New topic is the Titanic and now she is panicked about boats.
  • Constant anxiety around noises. If she hears a slight noise she immediately jumps and says 'what was that?' with a very panicked look on her face. Even with everyday noises that she hears regularly. If it rains she cannot tolerate the sound on the windows, and is very scared of wind noise too. This also extends to shadows and seeing things in the dark (she has a very active imagination!)
  • Terrified of flies, bees, spiders etc. I've always made a point of being very neutral/positive about insects etc, in the hope she would pick up on it, but it hasn't made a difference. Sometimes she won't want to go out on a nice day because she's seen a bee at the window or something.
  • She's always been very sensitive to noise, ever since being small. She finds places such as arcades very overwhelming. We stopped sending her to Rainbows group because it was in a church hall and she always got upset about the noise in there. Also another example is she was invited to a bowling party and as soon as we walked in, she shut down because of the noise and we had to leave.
  • Sensitive to smells - similar to the above. There's a few places where we have had to leave because she cannot tolerate the smell at all. Most of the time I can't even smell anything!
  • Sensory issues with clothing such as seams and tags and certain shoes.
  • Sensory issues with other physical touch/feelings. For example, she has a very strong reaction to her wet hair touching her skin after the bath. She also hates the feeling of when her hands are soft and wet in the bath and she touches her own/my skin. I have to hold her elbows to help her out of the bath because she refuses to hold hands.
  • When she's scared of something, she will cry and get herself in to a big panic where it’s really hard to calm her down.
  • She seems very paranoid about her friends and teachers at school. She often thinks that people hate her, or are being mean etc. when they aren’t acting this way. There’s been different things her teacher has picked up on, such as when the teacher says her name or calls her over, she panics and thinks she’s going to be told off. She’s so scared of being told off that she’s probably the most well behaved child ever (I know that’s not a bad thing!). There’s been a situation where there was a queue for the toilet at school when she was washing her hands and she got very upset because ‘everyone was staring at her’ but they were just waiting for the toilet. Shes also questioned why me and DH are ‘staring at her’ a lot when we are just generally looking in her direction. Her teacher phrased it as 'often misinterpreting social situations.' She’s been referred to a emotional/confidence building group at school by her teacher but I’m unsure how this is going.
  • She is VERY hard on herself. Takes everything to heart and is a perfectionist. If she makes a small mistake she will focus on it and replay it over and over again/keep talking about it even when I’ve reassured her it’s not a problem. She often says she’s a bad person and hates herself. Over lockdown this got quite bad and she told me a few times she was ‘too sad to be alive’ and ‘didn’t want to be alive any more.’ Although she hasn’t said those two things since lockdown and has been in better spirits since going back to school.

She doesn't really show any of the more common traits of ASD which I am aware of. I'll be honest and say I don't know a lot about it, but I do know they can present differently, especially in girls.

  • She has great language skills, very good at English and gets on ok with maths. Generally does good in her school work, so there are no concerns there.
  • She’s very social and has lots of friends. Teachers always say she’s very popular. She doesn’t have any problems making or keeping friends or interacting with other people.

I have generally just thought she was a very sensitive girl but as she's getting older it's getting more evident that a lot of these things are starting to hold her back. She's been telling me that the other kids at school are picking up on things and call her a 'scaredy-cat' which really upsets her. I've generally learnt how to manage her over the years but it's difficult. We do a lot of talking through situations which are going to happen as I pre-empt her anxiety and worries and it seems to help a bit if she's expecting something to happen (for example if somewhere is going to be noisy etc). When she's panicking and crying/cannot calm down, I've also learnt the only way to help is to be really calm and reassuring and talk her round, but then I get the impression from other parents that I'm being too soft and pandering to her. Anything else I did would just make the situation 10x worse though.

I'm unsure if I'm putting 2 and 2 together and getting 5 but just wanted to check after the posters on my other post suggested it.

I was considering emailing her teacher about my concerns. Do I need to do this? I haven't actually been able to speak to her face-to-face because of Covid but she spoke about a couple of issues on Zoom at parents evening and referring her to the emotion/confidence building group at school as mentioned above.

I'm sorry it's such a long post. Thanks in advance to anyone who manages to read it Smile

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Snowcaps · 17/06/2021 22:03

Just to add to this - I've been sat in her bedroom for a very long time tonight trying to get her to sleep. She gets herself so worked up worrying about things and she can't switch off. Shes said she doesn't feel safe in her bedroom because she doesn't like the 'dark spaces' such as the cupboard or behind her shelves. She's worrying about me and DH being mad at her for not going to sleep (we are very patient parents and barely ever get 'mad'), she's worried about DH not getting enough sleep (no idea what that's about!). Worried about her teachers being disappointed in her because she doesn't like the book she's been given to read at school. Worried about not getting enough sleep because it's so late. This is very typical of her and I've realised these sorts of situations have become more regular/getting worse recently.

I'm extremely patient and positive with her because I know any other reaction from me would just make it so much worse. She's finally gone to sleep clutching my arm. Being close to me or DH seems to help ease her anxiety (she's a very touchy feely and cuddly child. She would literally sit as physically close as possible to me all day if I would tolerate it!).

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Snowcaps · 17/06/2021 22:08

Also one last thing I forgot to mention is she's getting increasingly limited with what food she will eat. She used to be a really good eater and would eat most things when she was smaller but as she's getting older she's getting more and more restricted with what she's willing to eat. I'm unsure if this is also an indicator but wanted to mention it.

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Ellie56 · 18/06/2021 09:01

Certainly high anxiety and sensory issues go hand in hand in with ASD.
Our autistic son had sensory issues around clothes, labels, foods and certain sounds. He also used to suffer from anxiety, but nowhere near the level you are describing. Living with that sounds exhausting for all of you!

Have you asked for a referral to CAMHS?

A lot of patents have found this document helpful:

www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201906271131

Ellie56 · 18/06/2021 09:02

Sorry that should say parents.

When can we have an Edit button MN?

Snowcaps · 18/06/2021 09:11

[quote Ellie56]Certainly high anxiety and sensory issues go hand in hand in with ASD.
Our autistic son had sensory issues around clothes, labels, foods and certain sounds. He also used to suffer from anxiety, but nowhere near the level you are describing. Living with that sounds exhausting for all of you!

Have you asked for a referral to CAMHS?

A lot of patents have found this document helpful:

www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201906271131[/quote]
Thank you so much. And thanks for reading that massive wall of text I wrote out!! I've not spoken to anyone about it apart from her class teacher very briefly when lockdown was ending as they were asking about how kids were feeling.

Don't get me wrong, we have a lot of times which aren't filled with her worrying and in these times she's such a happy funny little girl. But we are finding all of these issues are slowly getting worse (possibly exasperated by the past years events?).

I'm not sure who I need to speak to about it - school or a GP? Or both?

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Doveyouknow · 18/06/2021 09:12

I think the thing that jumps out from your post is how anxious your dd is and how much it is impacting her (and your) life. On that basis I would ask the gp and ask for referral to Cahms. I would also talk to the teacher and perhaps the senco about how much she is struggling. It might be asd that is underlying this or there might be something else but I wouldn't worry to much about a diagnosis at this stage

Snowcaps · 18/06/2021 09:25

@Doveyouknow

I think the thing that jumps out from your post is how anxious your dd is and how much it is impacting her (and your) life. On that basis I would ask the gp and ask for referral to Cahms. I would also talk to the teacher and perhaps the senco about how much she is struggling. It might be asd that is underlying this or there might be something else but I wouldn't worry to much about a diagnosis at this stage
Yes absolutely. The most important thing is getting the support with her anxiety which she so clearly needs.

The sensory and other stuff aren't as prevalent and don't impact her day-to-day life that much, as they are pretty mild in the grand scheme of things. It does help build a bigger picture of her personality though. I'm unsure if I should mention any of that to the teacher/SENCO or just focus on the anxiety problems?

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NeonStones · 19/06/2021 13:07

Mention all of it. I’m not going to armchair diagnose but the professionals need the full picture to make an appropriate diagnosis. I would echo the previous poster who suggested CAMHS and talking to the school. It may be possible for school to refer her to services, where I am you can get referrals via GP or school.

Snowcaps · 19/06/2021 23:24

@NeonStones

Mention all of it. I’m not going to armchair diagnose but the professionals need the full picture to make an appropriate diagnosis. I would echo the previous poster who suggested CAMHS and talking to the school. It may be possible for school to refer her to services, where I am you can get referrals via GP or school.
Thank you. I emailed her teacher and she caught me at collection time on Friday. She said she will email me to arrange a time to have a proper chat on Monday, but it sounds very concerning and she's really keen to get dd the support she needs. She did say she will contact X person at school but she had a mask on and I didn't quite catch it. So hopefully it's a step in the right direction Smile
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LetItGoToRuin · 22/06/2021 15:02

Hi Snowcaps - how did it go with the teacher yesterday?

Snowcaps · 22/06/2021 20:53

@LetItGoToRuin

Hi Snowcaps - how did it go with the teacher yesterday?
Hello! Thank you for asking Smile I spoke with her on the phone and she was really supportive. She's a lovely teacher and seems to really like dd. We spoke more in depth about dd's anxiety and how it affects her at home. She said it doesn't seem as severe at school so she must bottle it all up, but the odd thing does creep out when she's in class.

She said she's going to speak to the person at school who deals with all of the additional needs stuff (she did say the proper title of the person but I can't remember it) as they have years of experience and know all of the right avenues to go down to get the help we need, and she's going to swap her emotional/confidence building group to a 1-1 session instead too. The TA in her class also has some specific experience with working with children who have emotional difficulties so dd has been doing some work with her too which dd said she really likes doing. The teacher also suggested a few things such as having a 'worry book' where dd can write down anything which is troubling her at school and at home, and I can also use it to communicate any concerns I have with the teacher, which we are going to try.

Thank you everyone who encouraged me to speak to her teacher as I feel much better now I've made them aware of it.

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