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Advice please on DD. Possible autistic spectrum?

40 replies

LilRedWG · 20/12/2017 12:43

I'm not sure where to start, so I'll start from the beginning - this may be very long. Apologies in advance.

DD is 11.7 and we've always had little things with her development.

She didn't sit until seven months, but then sat for two hours straight.

She was a later walker - had physio and had to wear special boots - two before she walked.

Her speech was poor and unintelligible - we thought it was down to glue ear - grommets fitted at age four - speech therapy from age three until she was seven.

As a little one everyone said how bright she was but then she lagged behind massively with reading and writing at school - finally put on the dyslexic pathway at the end of year three.

At the end of year three my school loving little girl said that she didn't want to go to year four as it would be her last year in 1st school (three tier system).

By the October half term of year four she was physically clinging to me screaming at the start of school. The deputy head suggested that I take her in to 'help the teacher' ten minutes before the start of school. We started a long process of me withdrawing. First I took her into the classroom to her lovely teacher, then just to the doorway, then to the end of the corridor etc. etc. School were amazing and they supported her massively with transition to the middle school (which is on a shared site).

Year five was better than expected - she had an amazing teacher who offered massive support and DD really clicked with. However the nightly stomach ache, which started in Y4 continued and homework was an enormous battle with what I can only describe as meltdowns - not a tantrum. DD would be totally out of control, curled up in a ball under the dining table screaming and crying. School didn't see any of this - they saw a hardworking, happy child but agreed to put pastoral support in the form of THRIVE in place.

Y6 was horrific for the whole family. Every evening DD would have terrible stomach pains, be anxious to the point of hyperventilating and finally fall asleep in our bed. DH would then have to carry her through to her own bed when he came up. Homework resulting in screaming, shouting, more meltdowns under the table. THRIVE practitioner at school was lovely and tried to support as much as possible. Teachers overlook incomplete homework etc as they knew how hard she worked at school and we kept them up to speed with home. Finally, the decision was made to withdraw DD from the English portion of the SATs but to get her to sit the maths - this helped her anxiety go down a little and she was thrilled when she passed it.

Now, we are in Y7 - THRIVE practitioner has left.

DD is 11.7 and has a reading age of eight, but is secure in the majority of subjects, which is testament to her "fabulous work ethic" and perseverance. I am immensely proud of her but something is not right.

On top of the educational problems and anxieties she is anxious about loud noises and always has been - she wore ear defenders to school discos when little, hates change with a passion.

She has known that we are spending Christmas at my IL's for a year but is still struggling to come to terms with it - "but we always have Christmas at home - that's how we do it!".

If we say, "Yeah, we'll do that tomorrow", then as soon as we wake it is a constant, "When are we doing it, can we do it now?".

Her school shoes have been the same style for the past three pairs, she won't have new trainers (which she desperately needs) because "they aren't comfortable", her leggings have to be a size 8 or she won't even try them on. If she thinks something looks uncomfortable she won't try it or feel it. We've had meltdown in M&S because she couldn't find anything comfortable.

She can't keep up with conversations with groups of her friends, either on chat or face to face.

I could go on, but I've probably bored everyone. I have a doctor's appointment tomorrow, alone, to discuss DD. It's not worth taking her along as she seems to put a mask on when around others - only immediate family see her behaviours. How do I get the GP to take me seriously. When I've been before they have prescribed antacids for her stomach and that's it. :(

If you have got this far, thank you for taking the time.

OP posts:
LilRedWG · 20/12/2017 12:45

Crikey - that was long!

OP posts:
ObscuredbyFog · 20/12/2017 13:39

Take a list of behaviours and difficulties that you've described above and particularly the ones that are mentioned in both of these articles, links below, and ask your GP for a referral for diagnosis.
You need to demonstrate deficits in all 3 areas of the Triad of Impairments, I'm pretty sure you can do that. If your GP doesn't understand, and lots don't, explain briefly how she responds to things in a way that's not appropriate for her age.

Girls can mask a lot, they are often missed for early dx because school 'don't see' anything but at least your school seem to be very much on the ball and co-operative.

www.autism.org.uk/about/diagnosis/children.aspx

www.autism.org.uk/about/diagnosis/criteria-changes.aspx

LilRedWG · 20/12/2017 15:57

Thank you. Have had a quick read and will be making some notes to take with me.

OP posts:
HardAsSnails · 20/12/2017 16:12

This is very good: Girls under the radar

I would make a list of things that concern you, perhaps under headings like social, sensory, communication, interests, behaviours, self-care/independence and motor skills. Take a copy for the GP to add to a referral.

If you have time you can look up the NICE guidelines and the Royal College of GPs guidelines.

Good luck, you're absolutely doing the right thing for her Flowers

LilRedWG · 20/12/2017 17:29

Thank you. One minute I worry that I'm imagining things and the next that I'm not. It's all very worrying.

I forgot to mention the trying to force her younger brother to play schools, exactly to her rules, which don't change. Needless to say it causes arguements, especially as he is growing up and has his own ideas.

OP posts:
LilRedWG · 20/12/2017 17:30

Thank you so much x

OP posts:
LilRedWG · 20/12/2017 17:31

Plus, a friend gave her a gift of dark chocolate for Christmas. She couldn't understand why I said she shouldn't have told her friend that she didn't like them. :-(

OP posts:
Moon05 · 20/12/2017 20:58

She sounds a lot like my 12 year old DD who was diagnosed with an ASD 2 years ago. Particularly

Moon05 · 20/12/2017 21:02

Sorry sent to soon. I was going to say particularly with the masking at school and meltdowns at home. Also the controlling of games with her sibling. And the brutal honesty!

LilRedWG · 21/12/2017 08:56

Thank you all for your words of wisdom. I just hope that the GP takes me as seriously this afternoon.

OP posts:
Shybutnotretiring · 21/12/2017 10:23

With her on the dark chocolate though. who does that, unless it's on special offer?

Orlok · 21/12/2017 11:43

She sounds very much like my DD, who was diagnosed with ASD aged 8, and dyspraxia shortly after that. Hope your doctors appointment goes well today.

LilRedWG · 21/12/2017 15:48

Got totally blown off. Sad

"Not referring to a paediatrician... sounds like it's anxiety-based..."

"The whole thing about autism is that it can't be masked - she wouldn't be able to hide it."

Feel stupid.

OP posts:
HardAsSnails · 21/12/2017 16:03

No, you are not the stupid one here. Your GP is ignorant.

Take a rest from it, do some more research and return with evidence.

This is sadly not uncommon Flowers

LilRedWG · 21/12/2017 16:11

Thank you.

OP posts:
Shybutnotretiring · 21/12/2017 16:14

The school should be able to help you here. Get them to write a letter to the doctor explaining what are the behavioural/academic issues at school. Make sure the letter gets through.

LilRedWG · 21/12/2017 16:21

Going to take Christmas and New Year break then print out the NICE Guidelines and take a highlighter to it!

I'm not saying that she is ASD but I do want her properly checked/supported. In the meantime have self-referred for Reach for Wellbeing - a NHS initiative to tackle anxiety.

OP posts:
LilRedWG · 21/12/2017 16:24

Thanks Shybutnotretiring, but she doesn't present at school, just home, hence the GP saying that she can't be ASD as she'd present everywhere.

OP posts:
Shybutnotretiring · 21/12/2017 16:39

I practically dictated what I wanted the Senco to write to the GP when DD was referred. She doesn't really have any behaviours except for lack of concentration at school either. That said she's on the ADHD pathway.

LilRedWG · 21/12/2017 16:41

Thank you. Feeling a bit lost to be honest. I don't want to label DD but I'm worried about her.

OP posts:
LilRedWG · 21/12/2017 16:41

I might be asking you for a copy of that letter....

OP posts:
Shybutnotretiring · 21/12/2017 17:06

I'll dig it out but it was just a list of things she does. you can skirt round where the behaviours occur (no need to lie). eg The following behaviours have been observed in [name removed]:
chewing small toys,
pulling at labels
lack of concentration
etc

ObscuredbyFog · 21/12/2017 17:53

Shy I've pm'd you, your dd's name is in your post.

OP Your GP is a Twat misinformed.

Get Googling and find evidence of girls masking and how autism presents in girls and women.

If you can stretch to it, a private dx by the Lorna Wing Centre is the gold standard as they satisfy all the "being believed" criteria by local authorities for funding and interventions.

Welcome to the world of being the parent of a child with extra needs, this is the first time you've been fobbed off, the whole system operates like this, you have to learn never to take No for an answer, always create a paper trail and to fight and to appeal.

It is difficult but it is possible. You can do it, we all have to do it.

Allfednonedead · 21/12/2017 18:24

Hi, we got a diagnosis for DS(6) recently with much less obvious symptoms of ASD.

He is a mostly model student too, but the school’s input mentioned details such as problems with managing turn-taking and difficulty on stairs.

Your GP is flat-out wrong about the ability to mask at school - partly school can be sort of helpful because it is so structured, I think.

MiaowTheCat · 21/12/2017 19:20

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Message withdrawn at poster's request.