Can you tell me about your GIRLS with autism please?

[Whatevermission]

And also, what is the benefit of a diagnosis

DD is 8 and I am wondering;

Still tantrums like a 2 year old
Cannot compromise, has to be her way or see above
Has few friends
Very bossy/controlling
Lots of sensory issues earlier in life though; mostly ok
Likes tidy ordered room
Doesn't sit still/always banging stuff/fidgeting/clumsy
Doesn't listen/asks questions but doesn't wait for answer
Very academic
Very

Thanks for your useful advice @willitbe, I'll do that.

@WitsEnd2018 if you're on Facebook there's a group called 'EHCP Support Group' which you can get good advice in.

From my own experience when making the initial request I said things like - masks anxiety at school then explosive behaviour at home, needs help reducing anxiety, needs help to ensure all sensory needs are met etc. I also included every medical letter/report I had.,

I didn't set it out to address what Support I thought they could provide I tried to gear it towards saying these are the needs. Then the professionals who do the EHC assessment confirm/identify what the needs are and specify in their reports how needs should be met.,

Hope that makes sense...

Another total fail at getting DD to school. And an awful evening of melt down at the thought of going to school tomorrow. Sobbed herself to sleep around midnight. Broke her heart and mine.

I can't keep making her go to school. She is experiencing it as trauma, she really is. I can't home school. I'm a LP and I have to work

So..private school or Steiner? These are 2 alternatives that I have come up with tonight. Another state school is going to be exactly the same. We are inner city and class sizes are 30. We looked round another local one and dds impression was that it was dark and the children looked like zombies (it was actually bright and light and full of art and the kids were noisy and friendly. I liked it)

Private school has much much smaller class sizes. More varied curriculum with more creativity, sports, forest school, swimming pool etc. I can't afford it, but I will work something out

Steiner is free and full of creativity, no school uniform (DD HATES uniform) but has failed every part of Ofsted including safeguarding

Any other options anyone can think of?

That is so familiar and, yes, mine experience it as trauma too. CAMHS told me not to try to force school attendance.

You may be better waiting for the outcome of an EHC needs assessment before trying to identify a school. The process involves observation and assessment by a number of different professionals resulting in gin recommendations about how her needs should be met in school. That will help you to identify the right school for her and, if the nearest school that can meet her needs is independent, the LA will need to pay the fees.

Multiple failed placements can compound trauma so think carefully before trying somewhere if you can't be very sure it will work for her.

Look for a Facebook group called Educational Equality. You will get great advice from other parents who have been through this and it's moderated by people who know the law well.

My daughter is 14. I'm pretty sure she has ASD and I feel so lost. I have let her down so badly and don't know what to do.

She started to have difficulties when she transitioned to Secondary School. Teachers fobbed it off as being normal but I felt it wasn't.

Things became gradually worse until she couldn't cope with school. She won't attend now. Initially school treated her like a naughty child.

She is under CAHMS now but getting that referral accepted has been another battle.

Issues are:

Misophonia, she can't bear to be in the room when others are eating and becomes emotionally dysregulated.

Cannot cope with smells.

Problems with motor skills, cannot use knife and fork, could not ride a bike.

Restricted eating--list of 5/6 foods and if one tastes slightly different to her she will refuse it.

She has always had friends but can be very controlling with them and cannot cope with groups of more than 3.

Is very blunt.

She is very good at masking and says she finds this exhausting and then takes it out on us when at home.

Becomes extremely verbally aggressive, and physically aggressive.

Has self harmed.

Struggles with sleep, at one point became verging on psychotic due to lack of sleep.

The main issue at the moment is school. I just don't know what to do. I don't know what they should be providing. They have agreed to work with her as if she has a diagnosis, but they just don't seem to get it. They have arranged a big meeting and expect her to attend. I explain this won't be helpful and very distressing for her. Then they offer to come to our house. That would be even worse for her. They don't understand a child with extreme anxiety can't manage a big meeting but they say she needs to be there so she can agree a plan to get her back into school.

CAHMS have been great and she should be having therapy in a few weeks.

We haven't perused a diagnosis because she isn't on board with it.

Any tips on this school issue would be greatly received. I just don't know what to do. I can't sleep, I feel sick with worry and just want to make things better for my little girl.

Also try Contact, the charity for families and children with additional needs.

contact.org.uk/

Thank you so much for this thread. After blurting it all out and a good sob I have had a look at the websites and requested to join the FB page.

It looks like my daughter is eligible for an ECHP for her MH difficulties (diagnosed by CAHMS doctor) do I request this from school?

Can just end up feeling so disempowered and hopeless in the whole thing.

It looks like my daughter is eligible for an ECHP for her MH difficulties (diagnosed by CAHMS doctor) do I request this from school?

School can apply for an EHC Needs assessment but you can too. There's a good model letter here.

Some professionals may tell you she doesn't qualify; she does.

There's also a good blog here.

Building links with other parents will help you with feelings of disempowerment and hopelessness

For those interested I have started to use this guide in a professional capacity because girls with autism tend to present differently than boys (boys autism symptoms tend to be mote well known) https://network.autism.org.uk/knowledge/insight-opinion/girls-and-autism-flying-under-radar?utmsource=The%20National%20Autistic%20Society&utmmmedium=email&utmcampaign=105595955myworld%20-%20resource%2016.05.19&utmcontent=Autism%20flying%20under%20radar&Keywords=Autism%20flying%20under%20radar&dmm_i=YA3,6ABU3,OWMR6T,OT7MI,1

My DD (11) was diagnosed this academic year. Many of these posts describe aspects of her, she can be such hard work and require so much of my energy and then turn around and do something incredibly thoughtful and mature. She is mostly a delight and wouldn’t be DD without her difficulties.

The above linked guide is a really good resource and I’ve shared it with teaching professionals who work with my DD.

There is lots of great advice on here about diagnosis and process so don’t want to repeat that but will say that for DD, a diagnosis has definitely improved her sense of self worth and validated some of the reasons she found things harder than her peers. It’s now okay to find those things harder, to need more reassurance or information about transitions. She is very bright but her social skills are miles apart from her academic ones!

I work with autistic children. Trust me, there is no downside to not getting a diagnosis. Denying it doesn't make the symptoms go away, it just means that you can't access support.

I'm now wondering if Im autistic (Id assumed I wasnt neurotypical but thought I met ADD criteria rather than autistic) but Im super bright IQ wise but failed at life rather abit.

When it comes to my daughter's assesment Im concerned some of the things I ought to be using as evidence I wont notice as they're "normal" to me...

My DD is 10, diagnosed at 5. We’ve never found any negatives about having a diagnosis. She doesn’t have an ehcp but receives support in a school group, from a mentor and from asd outreach.
She was very angry and often violent at home back at 5. She had a meltdown on a school trip and ended up giving me a black eye in front of teachers and other parents - a real highlight! She’s in a very different place 5 years post diagnosis and is a lot more in control of her anger. Still lots of problems with relationships with peers and also teachers (no hierarchy). She’s very bright but struggles with noise in the classroom and with things being a bit peopley! There are still Problems with sleeping too - but audio books help and she stays in her room to listen. Music has really helped her find a voice as well as giving structure to 3 of her lunchtimes at school. She is soothed by classical music and it’s one of her ways to help avoid a full meltdown at home. She is starting to recognise emotions in herself.
On paper she has the same diagnosis as her older brother but she’s a different kettle of fish altogether. As the saying goes, if you’ve met one autistic person, well you’ve met one autistic person.

I have a 17 year old DD, who I’ve been saying since she was 3 I thought was somewhere on the spectrum, she has 2 older brothers both ASD. She is textbook ASD girl, so many of the issues listed above, but she masked brilliantly at school, and literally broke down as she reached the gates. She goes from Anxiety to PDA. Unfortunately school were working from a general ASD (boys) & refusing to see the ASD girl

I went to GP countless times to ask for a referral, who said school had to, school refused to refer, because they didn’t see any of the behaviour she was displaying at home. When she was eventually referred to physio for hypermobility, she refused to talk to the physiotherapist. She couldn’t do any of the things requested because it was too hard. She constantly wants to be centre of attention (particularly at home), but then can’t cope when she is.....this has led to her being deemed difficult by GP etc. She herself says “she can’t talk to anyone she doesn’t know or trust”

Anxiety levels were created first day of senior school when she was told the teacher expected everyone to be “on time” school is 5 mins from home, started at 8.30 am. If she hadn’t left the house by 8.05, anxiety levels went through the roof. She spent 5 years in the school & is one of a few children that has no bad behaviour points awarded. It took her a week to get over getting someone else’s by teacher error! Friendships have been a nightmare & generally with other girls with communication issues.

Anxiety is such in GCSE’s that she lost it shortly before her drama exams,she walked out & refused to go back to school for a week, head of year came to get her on exam days, & she was in a room on her own with 2 members of staff. It was the only way they could get her into both the exam & school that day. Funnily they did question why I’d not taken her to the GP 🤬

She’s totally unable to make a decision & realistically is totally unable to get her own needs met, she isn’t able to vocalise her needs, be that in a Drs surgery or a shop.

My boys when distressed tend to turn it in on themselves, the oldest one hides his anxiety, his younger brother has a tendency to self harm, and she tends to explode outwards leaving everyone around her thinking wtf just happened here?!?!

My 48 year old sister was recent dx’d ASD & I think there’s every possibility that had our father been born now, he too would have been dx’d

I am in tears reading this thread because so much of it rings true for DD & our family. One of my main worries is not being able to progress a diagnosis because the school see an entirely different child!

One of my main worries is not being able to progress a diagnosis because the school see an entirely different child!

This masking is really common in ASD. I have found that teachers are often unable to see past it but other professionals can be better at understanding what's going on.

Teachers are usually asked to contribute their observations to assessments but they aren't anything like qualified to diagnose ASD and aren't usually asked their opinion.

If you feel that your DD's difficulties are having a significant negative impact on her everyday life and well-being, please request a neurodevelopmental assessment. You can print off some info about masking to share with professionals just in case.

Re diagnosis, we used church as a second setting as school were adamant that she is not autistic.

The first issue is persuading the GP to refer with enough evidence to get accepted.

After that it is forms...school said the opposite as us, which is why we included a letter from church with their observations.

DD was also very autistic in the assessment. Flapped, clapped, hid, the lot.

Im nervous about the assesment my daughter has. Shes unlikely to clap/flap or show any outward signs.... as its usually after stress she melts down at home.

She can hold it all in for a set period. But even then her teacher tgis year has recognised shes autistic.

Im worried i need tonpresent her case right, and might not!

Im worried i need tonpresent her case right, and might not!

This isn't like a battle for SEN provision. You don't present her case.

There should be a group of professionals asked to observe your DD, talk to her, talk to you, talk to school, etc. They will then talk all the information gathered about her in different situations by different people who are focusing on different skills and consider them against the diagnostic criteria.

As a parent, it might help for you to make sure you mention things that you feel should be part of the diagnostic conversation but you aren't responsible for making sure that the right evidence is considered.

It's hard to relinquish that control but you need to try to step back. Your role in a diagnosis is to contribute to her developmental history and provide your observations of her behaviour, triggers, what helps, etc.

If she doesn't meet the diagnostic criteria now, she can be reassessed in the future. Children with ASD often become more different from their peers and have greater difficulties as they mature. She may meet the criteria then.

Gold I understand that. I'm not expressing myself very well. I'm concerned I'll be asked questions and Ill answer incorrectly die to my own bias/lack of knowledge.

For example until recently I wouldnt, if asked, have said my daughter had a special interest. Thats because to me it looks like she researches topics shes interested in a "normal" way because its normal to me. It took a friend to gently point out that none of her friends would obsessively research like that... and it doesnt have to be dinasaurs and trains and lists of facts ...

So its my part in it Im doubting- my observations are obviously flawed! Im taking notes from conversations I do have though and have looked at some lists of female autistic behaviour but as I said, I overlap a fair bit so would interpret questions differently.

School have been fab and initiated it all so I'm not worried there. They said they'd continue the provisions they've put in place regardless of diagnosis but a diagnosis would help for transition to secondary.

Its all a new area to me.

That makes perfect sense.

Maybe you could express exactly this concern before having conversations with professionals. Put the onus on them to check that your perception of what would be normal in the situations you're discussing is correct.

The psychologist who talked me through DD1's developmental history was skilful in questioning why we did certain things and whether other people might do them. It was that appointment and completing the first DLA form that brought home to me how much we had adapted our family life to accommodate autism.

Ah thankyou. Thats reassuring. And yes Ive come to realise we naturally adapted when she was young (partly as Id want to avoid noise,crowds, know whats happening next...) so its hard to see.

I guess for us its been a more gradual realisation (with the help of others pointing things out) rather than me being sure my child was "different." I also had a stereotypical view of autism in my head which she/we arent so have had to re look at that!

Thankyou. Of course they will know what theyre doing and must have people whose parents are possibly on the spectrum/have traits.

Ds age 14 presents a lot more like a girl with ASD than a boy. He has his speech and language assessment in two months time and although he has obvious difficulties with communication I'm still worried that they won't see them. I met with his deputy head yesterday and the school are now well aware that he is managing to mask all his anxiety and other issues whilst with them. Secondary school has not worked at all for him and it is so sad to see your bright child falling apart. In some ways I wish he had presented more like a boy normally would as I feel he would have got support earlier on.