Anxiety or Autism - how do you know?

[Notplannedforthis]

DD10 has always suffered with anxiety. It manifests as angry outbursts that can last for hours and has at times lead to banging her head or scratching her arms.
Triggers for this include - social embarrassment such as being told off infront of peers, unexpected changes to routines or things like seating arrangements, making mistakes in her work, something not turning out the way that she expected.
When she was younger she would also have these screaming episodes about certain sensations such as having to wear tights with seams in the wrong place - she still finds this difficult but can articulate it better now. She's funny about certain food textures still.
She rigidly adheres to rules, even if told not to.

She's a model pupil at school and they see not a whiff of these outbursts. It's usually something at school that will set her anxiety off, but she'll bottle it up and then fixate on it when she gets home. She was slow to get a group of close friends and related better to adults but only now does seem to have a group this year.

On the other side of the coin she:
-spoke early
-engaged in imaginative play
-understands subtlety/nuance/sarcasm in language
-has amazing empathy
-no stimming that I can tell
-no repetitive behaviours
-no special interests
-behaves well in school and they don't see any of the anxiety.

Does this sound like autism or some kind of generalised anxiety?

We've done lots of stuff to attempt to help with anxiety at home, but the hardest thing is getting school on the same page as they don't seem to understand that doing things like springing a change in timetable/seating arrangement or calling out her mistakes in public will make her spiral out of control at home, even if she looks happy at school.

It's really hard to say, but it might be worth looking up the PDA presentation of autism (if you look up the PDA society they have some really good materials and also advice on parenting and for teachers - there is probably a lot they can do at school to help your DD as you suggest, even if she manages to hold it together until she gets home). Even if your daughter doesn't have PDA some of the materials might be useful.
www.pdasociety.org.uk/working-with-pda-menu/info-for-education-professionals/
www.autism.org.uk/advice-and-guidance/topics/education/different-behaviour-between-school-and-home

A lot of your list of reasons not to be autistic are not definitive. For example, lack of empathy is not part of the DSM definition of autism, and is highly contested: many autistic people are highly empathetic (sometimes to an overwhelming extent, but sometimes they may express it differently). There are also different types of empathy and autistic people may struggle with some but not others. Similarly my DD (who is autistic) also had good imaginative play at home (she didn't show it so much in formal assessments), spoke at the expected time with a big vocabulary, understands nuance/sarcasm and loves word play and puns, etc. I never thought she had obvious stims but now I know more about autism I can see that she does jump up and down more than her peers when she's excited/happy about something (and as a baby used to tense her legs - so it was less obvious). She doesn't have repetitive behaviours but does have special interests (though they change over time and she has several at once, so they might not look how you would expect). She has always found it easier to relate to adults than children, though she does have friends - but doesn't tend to mention particular friends at school (she is 7) and is still best friends with a friend from her previous school.

Perfectionism and rigidity about rules and routines certainly can be part of autism but I'm sure there are other possible reasons too. My DD can struggle with some of the things you mention (she has quite an extreme fear of embarrassment: so while she's OK in a choir/group performance she can't do a solo performance or even have her flu spray with strangers watching), and also the sensory issues (for my DD waistbands and stiff shoes are still a bit of an issue, and we do leggings and socks instead of tights at school, for example). You might find that even if your DD can tolerate these sensations now, she may be better able to manage the school day if she is comfier (though I realise that social desire to not stand out from her peers/suffer embarrassment may make this impossible). DD can be very nervous about new experiences - though she will give them a try, but I know it's draining for her and I need to reduce other demands when she is having to do something new or unusual (like a big family party or a school trip).

It sounds like a Dx of something might help school take your concerns seriously, but it's hard to say whether that Dx should be autism or something else. Because my daughter is autistic (and probably I am too) I tend to see autism everywhere, and certainly it's not inconsistent with what you've said: but I'm pretty ignorant on OCD, GAD etc. so I can't say whether your DD's presentation might fit those too. It definitely seems worth consulting an expert to try to work out what is at the root of your daughter's distress. I wonder if an Educational Psychologist might be useful? I know it can be really hard to get seen by CAMHS etc. - is going private an option for you? If you think the PDA profile fits, the PDA Society website has a useful section on the diagnostic pathway for children:
www.pdasociety.org.uk/life-with-pda-menu/family-life-intro/diagnosing-pda-children/

My Ds has an autism diagnosis and I would say that his anxiety is probably his biggest barrier to learning - and the thing he struggles the most with in life.
Anxiety is probably the most common way that autism manifests itself in people with 'high functioning' autism and it can be completely debilitating. That's not to say that everyone with anxiety is autistic of course.
Diagnosing autism, as I'm sure you know, takes a team of highly-skilled professionals - which is partly why the waiting lists are so long. They will be able to tell if your DD meets the criteria.
In my area it's currently a 2-3 year wait - so I would say that if you think it's something worth pursuing, get the ball rolling now.

I'm assuming your DD will be going to secondary school soon. My concern would be how her anxiety is going to manifest itself when she has 15 different teachers, homework, puberty kicking in etc.

I know you say that her behavioural difficulties don't happen in school and that can sometimes make it hard to get school on board. I would start keeping a diary of how she struggles at home. You can go to your GP with it and ask for a referral. In some areas it's CAMHS who hold ASD waiting lists - in others it's a community paediatrician. You can ask for a CAMHS referral for her mental health anyway - although again I'm afraid the wait lists are long. CAMHS wouldn't even see my Ds, even though he has a history of self-harming so we're looking at having to go private. I believe they vary from area to area as to how helpful they are.

As LightTripper has suggested, going private may be an option if you can afford it.

Have you spoken to the school Senco about your concerns? And/or her class teacher? Is your DD in Yr5 or Yr6? If she's going to be going to secondary school in Sept then I would be contacting the Senco of her secondary as soon as you know where she will be going as it sounds like she would benefit from additional transition sessions.

Thank you so much for the responses. She's in Y5.
The school have made a referral to CAMHS, but have said that it will be 2-3 year wait. I'm wondering whether it would be beneficial to pay privately.
School have pretty much told me today that they're unable to accommodate her needs and if I want things like 'warnings before big changes in the classroom' then I need to be looking at another school, but really they just think I'm exaggerating the way that she is at home as she seems fine at school.

This makes me so angry. Schools have a legal duty ('best endeavours') to ensure that a DC's needs are met - with or without a diagnosis.

Some information here:

www.ipsea.org.uk/the-best-endeavours-duty

and here:

www.ipsea.org.uk/Pages/Category/how-should-your-nursery-school-or-college-help

I would recommend contacting Ipsea or SOS!SEN for some advice. It can be difficult to get through but it's worth it. They were helpful to me when I was applying for an EHCP for my DS - after his school Senco dismissed me saying he would never get one. (We did.)

We considered going for a private Asd diagnosis as the wait times were so long. Not sure where you are in the country but we looked at the Lorna Wing centre. We were quoted around £3,000 I think. That's for a full day assessment and follow up reports.

Complain to the school in writing about their failure to make reasonable adjustments and provide SEN support. Whether it is anxiety or autism, as toomanyminifigs posted, they have a statutory duty to provide support.

I second applying for an EHCNA yourself. IPSEA have a model letter you can use.

From your post I would definitely want to rule ASD out. Girls with ASD can present differently to the stereotypical view. Many do speak early, and have a very sophisticated use of language. Many also have amazing empathy, some to the extreme. Obsessions and special interests are quite often different in girls too, often more socially acceptable so fly under the radar. It doesn't surprise me school don't see the anxiety, they often don't, it doesn't mean there aren't signs. Girls are often expert maskers and many schools are rubbish at spotting it.

Also, is she actually good at imaginative play, or does it just appear that she is? Many people thought DD2 was good at it until it was pointed out to them DD2 would play out the 'scenes' she had witnessed in real life.

It sounds more like ADHD than ASD to me, just from what you’ve written

Thank you so much for the replies. After a long meeting with the head teacher that involved her mentioning other schools many times including asking whether I could afford private school, she agreed to allow DH and I a meeting this week with DDs teacher and the Senco, but only with her present.
The head teacher either doesn't believe us about what DD is like at home or thinks it's all to do with our parenting. Regardless of the fact that the headteacher is not on the same page as us, we really don't think changing schools at this stage would be in Dd's best interests as she does not cope well with change and she'll soon be facing the big change of moving to secondary school.
DH and I believe that a few adjustments that we think are reasonable at school would massively help DD with her anxiety. The difficulty will be getting the school to a) believe that there's a problem b) agree to the adjustments c) follow through with what they have agreed to.

Any tips on how to approach the meeting? We haven't been given much time (15 mins) so we need to focus on what's important.

I was thinking we go with a list of DD's anxiety triggers and what we would like the adjustments to be and then let them tell us if they think they're unreasonable.

Sounds exactly like ASD to me (mine was diagnosed just before secondary school). Not coping with unexpected changes to routine/doesn't like big change, sensory issues, melt downs, rigid in following rules, highly anxious, all sounds very typical of ASD. She sounds a lot like my ds who was diagnosed with aspergers when that was still a diagnosis. He was an early speaker, extremely well behaved at school (needs time to decompress after), very bright, had no repetitive behavious, no stimming, did like to explain jokes when young but a great sense of humour and sarcastic.

The school sound completely unsupportive - could you ask them to get someone in from SEND to observe and speak to her? That's what happened for my son and the lady who came was amazing because she had such experience of working with kids presenting in all different ways and the solutions to help them. The school never did any of them but that was no big surprise...Her report was also useful for diagnosis. It also took weeks/months rather than years to get her to come.

I'm shocked that the school can't do something as basic as give a warning before a change of activity etc - that would just be good practice imo to allow kids to finish off/tie up what they are working on. Bizarre. Is your daughter able to filter out distractions? That was a biggie for us and simply solved by ds sitting at the front of the class - although shockingly it has taken me from primary school to his GCSE years to actually get this to happen in almost all his classes (even primary school didn't seem to understand what 'at the front' meant and thought it just meant 'not at the back'. It makes a huge difference, in Yr9 in English I thought he was going to end up being moved down a set, by the end of Yr10 sitting at the front he was predicted 9's in Lit and Lang.

What are dd's triggers and what are the adjustments you'd like?

I like your idea of a list but I would be inclined to send something in writing in advance setting out the triggers and some ideas on adjustments you think would help. Flag in the cover e-mail that you are open to hearing other ideas if there are things they think would work better/things they have had success with before with other children. They must have had anxious children in the classroom before, so if they really have no experience of accommodating those children that is a terrible indictment of them as a school. I would bring hard copies to the meeting to make sure everybody has it in front of them.

Some adjustments (like a calm classroom environment, or warning of changes in advance) sound like they would benefit the whole class and should be super-easy to implement. I would include things you've mentioned before, even if they've said they are impossible, and say you would like to discuss them: so the list becomes an agenda for the meeting.

Of course this will give them time to come up with excuses/push back if they choose to do so - but also avoids a knee-jerk "no" in the meeting and makes best use of your time. And whether they choose to push back or be constructive (either accepting your suggestions or counter-suggesting something they think would work towards the same goal) this will at least give you a good framework and make it very clear whether they are open to being helpful or not.

It may be worth sharing something like the link below with them also, to give some context (although it seems hard to believe they have never learned about the very common characteristics of holding everything together at school and then letting everything out at home).

e.g. www.autism.org.uk/advice-and-guidance/topics/education/different-behaviour-between-school-and-home
or
www.autismeducationtrust.org.uk/blog/stress-bucket

Then after the meeting I'd send an e-mail summarising what was agreed (or not agreed). If the meeting didn't go well I'd consider copying Governors into that one (or maybe there are other more constructive ways to escalate - but cross that bridge if you come to it I guess). Having a paper trail at that point of your efforts to engage and be constructive should be helpful.