Autism? Something else? 9yo girl. Advice from mums of girls with diagnosed autism please.

(9 Posts)
ruralliving19 Tue 07-May-19 15:34:28

I've worked in special needs myself but somehow when it's your own child, it's harder to call.

Background: younger DD is 9. Her dad and I are divorced. Her dad was diagnosed with autism in adulthood, after we split. He's a difficult man and she has a negative view of autism because she associates it with him. So I need to tread very carefully if I go down the route of getting her assessed.

So, my girls have been through a lot in their little lives. Their dad was abusive and we left 4 years ago. 2 years ago I moved them halfway across the country and they changed schools. This followed a house fire, which was obviously scary. We've just, finally, got settled and bought our own house. My elder daughter has somehow come through all this a mostly confident young lady.

Not so my younger. I love her but she is exhausting. She demands my attention constantly. If she doesn't get her own way, immediately, she tantrums. This might involve hitting me or kicking me or ripping my books or paperwork. Underneath it all she has very low self esteem. She doesn't think she's good at anything. She is in constant competition with her sister. She is obsessed with everything being 'fair'. I give her so much love and praise, I put boundaries in place and she ignores them but I know she doesn't really get given consequences as either she doesn't care about them or, if she does care, they escalate the situation and she tantrums more.

She also has some sensory issues - sensitive to certain noises and touch. She has an obsessive interest in dogs, can list all the breeds.

However, I've never really noticed social communication problems - she can hold a conversation, she makes normal eye contact, she doesn't speak in an unusual way. She enjoys pretend play. She's a little socially immature but she has friends. She hit all her milestones on time, she does well at school although she hates writing and her handwriting is dreadful.

The only problem is at home - but it's a big problem. She dominates day to day life and it's not fair on her sister.

I'm running out of ideas to try. Is this just me being a crap parent or does it sound like she might have autism? My mum thinks I'm just too soft on her, but then she advocates smacking her and I'm absolutely sure that would make things worse.

OP’s posts: |
LightTripper Tue 07-May-19 17:23:34

My DD is only 5, but was Dx'd last year and having a lot of autistic traits myself I have read pretty obsessively about girls on the spectrum and I think it's worth investigating at least.

We have local friends with 4 girls, 2 on the spectrum and one presents more like my DD (seems shy if you don't know her, more social issues - can be totally in her own world when she is focused on something - but not much sensory) while the other seems more like your DD, and has more sensory issues and meltdowns but does have friends and seems outgoing and confident at school. So there are many many different presentations of autism in girls.

Definitely things like normal eye contact with you, holding a conversation, speaking in a normal way and enjoying pretend play don't rule out autism at all (my DD does all of those and has from a very young age). The things that led to her Dx were that she pointed very late (e.g. wouldn't point out an aeroplane etc. just to show us, though she knew what one was and could perfectly well point one out in a book from 18 months or younger), didn't ask for things until very late despite having a very big vocabulary from an early age (e.g. would never ask us to reach something for her, or get her a drink or a snack), very long attention span (would happily sit and pore over a pile of books for ages from a long age), slow development of gross motor skills (which I know think was partly a proprioception issue - but also hypermobility which is common in autistic girls - she is v bendy). When she started having her assessments they said she had less eye contact than is typical - but it was never something we noticed as odd (I think she has quite good eye contact with us). So far she seems popular and happy at school, though I can see that she sometimes doesn't tune into friends' questions, or wants to play her own thing (happy in her own company: would rather play her game alone than something she's not really interested in with somebody else) and imagine they might find that frustrating as they get older.

It may be worth looking at websites on PDA (Pathological Demand Avoidance) too - I don't know a lot about it and I believe it's somewhat controversial whether it is really a "thing", but at the very least it seems to be a common presentation of autism. If you feel that fits it may be that you need to back right off demands at home (i.e. the opposite of what your Mum is suggesting, which I know isn't easy - especially with another child). Maybe supporting her interest in dogs could be useful too - something that can build her self-esteem and where her knowledge will be valued? E.g. if they have open days at a local animal shelter, or if there are any local dog shows you could take her to?

Doing well at school and then exploding at home is also very common in autistic children (I think actually particularly bright ones, who put a lot of pressure on themselves to do well, but end up bottling a lot up and then let it all out when they feel safe at home).

I know the book "The Explosive Child" is often recommended here (luckily my DD is not so explosive so I haven't needed it yet).

Laura James describes what she was like as a girl in her book "Odd Girl Out" (though she wasn't diagnosed until an adult), so that may be worth a read. I am just starting Rachel Lucas's "The State of Grace" which is a novel about a girl with Aspergers: Rachel and her daughter are both autistic. Sophie Walker (ex-leader of the Women's Equality Party) has a daughter, also Grace, who is autistic. I saw Grace speak at a conference recently and she was very insightful (read an amazing poem she had written about her experiences). Sophie's blog here has posts about their diagnosis process and some of their problems with school and is worth reading (I believe also published as a book - "Grace Under Pressure"): courage-is.blogspot.com/.

Hopefully with these resources (and maybe also try Purple Ella and Invisible i and other autistic female vloggers on YouTube) your DD can see that even if she is autistic her autism would be totally different to her Dad's. Purple Ella also has a good vlog about her sensory first aid kit, which might have some useful ideas for things for your DD to try. Invisible i (Katie) has a vlog when she goes back through her old school reports and talks about her school experiences which might be useful. They were both only Dx'd as adults, but Ella's daughter is about 6 and diagnosed autistic too (as is one of her two sons).

It seems unlikely to me it's a parenting issue given your different your elder DD is - though I know going through stress at different times of life and with a different personality can have a very different impact. Still, it sounds to me like she's a very anxious and sensory girl, so whether she is autistic or not learning more about autism and how to parent autistic children would be a good use of time.

I know you work in SN so you have probably seen lots of this before, but hopefully there's something useful in there somewhere!

Lackofsleepforyears Tue 07-May-19 19:47:52

I too think it would be worth exploring but maybe just suggesting to your daughter that you want to speak to someone who may be able to help her understand and manage her emotions.

My daughter has just turned 10. She has always been an individual and to be honest we have embraced her being rather quirky. She has had a few health problems that probably delayed me seeking a diagnoses but I always suspected ADHD and she was diagnosed with this last year and has now also been diagnosed with ADS too. To the outside world she presents as a lively, bright, confident, spirted, happy girl. She has never had a bad report or parents meeting and is doing well at school. However, at home she can be her true self and the mask come off as she feels safe. She can be very reactive, volatile, aggressive, argumentative and needs constant attention. She struggles to understand the impact of her actions on others but does not respond well to rewards or sanctions. She has lots of sensory struggles (hair brushing, teeth brushing, labels in clothes have to be removed, hugs too tightly etc). She also acts much younger than her age. She does have friends but not best friends and I know she prefers to play with the younger children who all adore her, but I fear she bosses them about! She has good eye contact. She is obsessed with cats. Hit all her milestones (possibly a little late to walk at 17mths but was chatting very early), she did have hypermobility and loves make believe. When I asked for a referral she was pretending she was a cat (aged 8)! The GP did not refuse!

ruralliving19 Wed 08-May-19 10:31:21

Thank you both for your thoughtful replies. Lackofsleep - that's interesting about the cat play, my DD is always role playing being a dog! (She actually has about 3 different 'dog personalities', they're hilarious and so I'm afraid I don't discourage her!) She wouldn't do it in public though, only at home, she's started being very aware of what others might think of her recently. She sounds very similar to your daughter. I've wondered about ADHD/ADD as she can be pretty hyper but she can focus well, so I guess I discarded that one. I think I'll have to see how I can persuade her to come to the GP or psychologist with me.

OP’s posts: |
BlankTimes Wed 08-May-19 12:58:05

Go to the GP on your own with lists and descriptions of her behaviour, ask for a referral to someone who is experienced in diagnosing autism/add/adhd in girls.

Lackofsleepforyears Wed 08-May-19 13:01:03

Ruralliving19 When I made an appointment I explained to the receptionists what it was about. I then took some notes to the surgery for the GP to read before our appointment and explained I would find it difficult to discuss everything in detail in front of my daughter. They were very good. There is a massive cross over between ADHD and ASD. She is not always hyperactive, far from it, but if she very slightly excited or sad you get the extreme! She can also focus well, if it interests her. At school she would not always ask for help preferring to just look out the window. She is very different to how most boys with ADHD present. She is also very different to by son who also has ASD!

PantsyMcPantsface Thu 09-May-19 07:47:32

The domination and control is definitely something that we get with DD1 who is 7. In my mind it is in another league to other girls of a similar age when they're all veering between strong-willed and mildly despotic and I have a very strong question mark in my mind about the possibility of an autism diagnosis in the future.

We get the constant need for attention, the constant need for control (it comes from anxiety and we've started gently along the referral path for that angle), some confrontational attitude to hide when she's anxious and we get the temper and outbursts at home - but because it's all at home people don't take it seriously. At the moment I'm just documenting things but it's definitely in my mind and on my radar.

coffeeagogo Thu 09-May-19 08:06:09

DD 9 has been referred for ADHD assessment after a long battle with school. GP wouldn’t support without school input and school didn’t see the issues (huge meltdowns, anxiety, sensory issues with hair brushing, teeth, clothes, labels, smells, food ......) as it was all at home. In school she is a perfect student, quiet, conscientious, a bit of a day dreamer but no trouble.

At home she broke my us. We didn’t know what was going on as she is the eldest and has always been difficult (can’t keep her hands to herself, low touching boundaries et...) we only really appreciated how different her behaviour was when her sister just got older and didn’t struggle with all these things. Our referral went in at Feb half term and now we wait, but in fairness the school are now very supportive and she has lots of extra support (play therapy, social skills etc.) she is so much happier now at school.

Trust your instincts OP! I wish I had earlier

AspergersMum Thu 09-May-19 08:25:54

OP I'm autistic, as is DS and I would add that during the CAMHS assessment, they did probe around DV and any other traumatic events so your DD's past experiences might cloud how they see her actions. Just a friendly heads-up as I know it is so hard for girls to get their diagnosis and the circumstances might make it harder. But her dad being autistic strengthens your case IMO due to genetic links.

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