To wonder why nobody thinks my DD is autistic?

[Nobodylistens]

DD is 11.
She has always been quiet, intelligent and rather intolerant of peers her age.
At some points it came across rude - she got to about 6 and couldn’t see why kids her age were still running around dressed as fairies so would rather play alone or with one other child similar in nature.
As time has gone on, she has become more and more socially awkward - she hates any situations where she will have to talk to people she doesn’t know and refuses completely to attend holiday clubs for me to work but also won’t be left alone at home for any length of time in fear for someone breaking in ( we’ve never had a break in )
Shes not affectionate and tenses up completely if anyone shows her any affection and is clearly visibly uncomfortable; tears when nan tries to hug or kiss her goodbye ( we’ve had to tell nan to stop in no uncertain terms )
Shes now gone vegetarian which is fine but can’t accept others in the house are still eating meat and is visibly upset at meal times where meat is being served and asks to eat in her room alone so she doesn’t have to see it
She can’t hear people eat - she leaves the room if someone makes a noise whilst eating
She can’t share a room on holiday with her sister or me or dad as she can “ hear “ us breathing and gets frustrated that we can’t sleep with our mouths closed and no noise
Lack of empathy - a toddler fell over in front of us today and older DD ran over to pick her up; DD said she should have looked where she was going
Massive attachment to her dog, almost obsessed to the point she thinks she’s a human; talks to her, cuddles her, speaks about her the entire time we are away from home for any length of time

Lots more examples but feeling especially drained tonight as she has finally gone to bed after being convinced that the flies we saw on the dog walk might now be in her bedroom - she doesn’t want to sleep with me; says that’s weird at her age ( even though 13 year old DD sometimes does ) but sometimes just won’t / can’t sleep so sits up all night as I won’t let her have technology after 8pm so just repeatedly comes in to tell me she’s bored and can’t sleep but doesn’t actually want anything I can offer.

Im sure there’s something going on but nobody agrees.

anyone been here?

Here's a great explanation of sensory issues, when you understand the processes of sensory integration, it's easy to understand why some children and adults love hugs and others cannot bear them.

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

My DD is adult now and her experience is that some sensory issues now are not as challenging as they were when she was a small child, whereas others don't seem to wane with age, or haven't yet.

For children and adults who are overwhelmed with sensory information and can't filter some of it out to be able to say understand speech in a crowded area, or eat at a table because of the perceived munching and slurping, we've found Flare Calmers very effective. They have a section on their website for their autistic customers' reviews.
www.flareaudio.com/products/calmer

This website is also ecxcellent for self-help and tips in all sorts of situations,
www.theottoolbox.com/

@FennelAndOnions Maybe we should start giving out ignorance labels.

Seconded, there should be a MN badge on all their posts that signifies they will minimise and deny any possibility of autism even when enough evidence to seek assessment has been plainly described by someone asking for advice.
Just as no-one can diagnose online, similarly these people shouldn't be able to flatly and authoritatively deny the possibility online either.
Medical diagnoses are not "labels" it's such a derogatory and unnecassary terminology, yet it's trotted out on every 'I wonder if my child may be autistic' thread ad infinitum.

Anyone can have a few traits, but to have a diagnosis, "The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.
See, that's the bit that matters, “limit and impair everyday functioning”

Not quirks, not personality traits, not mild irritations, not temper tantrums that cease when the desired object is given, not wilful bad behaviour, not 'the teacher would tell you if there was anything' not 'it all seems ordinary to me you're fussing over nothing' and all the other regularly trotted out excuses.
Real difficulties that limit and impair everyday functioning.

If a parent posts listing a lot of possibly neurodiverse traits, then please encourage them to ask for an assessment for their child. If the parent's mistaken, a diagnosis won't be given, it's as simple as that. But if the parent's suspicions are correct, then an assessment which leads to diagnosis can help the child in innumerble ways.

Why would anyone want to try and stop that from happening?

I’m feeling a little heartbroken for her
She doesn’t want any involvement through school or elsewhere - she cried and said she doesn’t want to have anything wrong.
No matter the way I word it - this is how she feels so I’m a little stuck from here

@Nobodylistens .. no one can answer if your dd is autistic

As I said earlier but you may not have seen her her an assessment if you can afford it

It has helped my dd understand herself and has got her extra support and help at uni which has been really helpful .

I wish I had known before she went through puberty as I'm sure we could have helped her navigate life with more understanding .

But it isn't "Wrong" Different is NOT wrong.

Try and find as many examples as you can of things she can relate to tht describes differences and still being able to do the same thing.

Find as many dog based examples as you can, better than this just offf the top of my head.
Jack Russels and German shepherds look different yet they can borh bark. Their barks sound very differnt. One isn't wrong and the other right, they can both do the same thing but they do it slightly differently.

Petrol cars and diesel cars and electric cars can all do the same thing, but they do it differently.

Windows and Mac both power computers, they can both do the same things, but they do them differently.

Go on OP, you have to make the distinction between differences being more than acceptable whilst not being 'wrong'.
There are bound to be loads of examples online.
Different does not equal wrong.

Being autistic isn't having something wrong with you. It's about having a different type of brain and as it is rarer, the world isn't set up for you. It's not intrinsically bad.

Show her some videos op to help her decide. Knowing she's autistic - IF she is - doesn't change her, it just helps her understand herself and advocate for what she needs to be happy and comfortable in life more easily.

There's a couple of good ones - "Wonderful Things can happen" is a nice one, and there's one by spectrum gaming on YouTube called "watch this if you think autism is bad".
There's also the girl with curly hair project, though you have to pay to subscribe.

Diabetes is a physical condition. Autism isn't

Don't be too sure. Some reecent research in the US has stated that the brain processing differences between NT and autistic individuals can be seen via MRI imaging.

@Snoozer11 that’s probably one of the stupidest posts I’ve ever read. Nobody wants lifelong disability for their child. Stop being an arse.

Autism is a developmental disability. If parents want a diagnosis to excuse their parenting they’re sent on their way pdq. Just getting on the waiting list is hard enough, then there is the diagnosis itself.

My 3 children are autistic and so am I. 1 has a diagnosis, 1 is pending, 1 isn’t bothered atm. My mother was that mother in the 70s accused of having a naughty child. It loved with me for 50 years. I don’t want my Dd experiencing the same and want my diagnosis for my mother as much as me.

Autism isn't "bad behaviour", it isn't a diagnosis that is easily achieved. We diagnosticians are trained in recognising the salient signs of a different neurotype. The diagnostic process includes developmental history, specific observations in two locations, and diagnostic assessment using research based tools. If we are unclear at that point, we refer for speech and language, occupational therapy and/or educational psychology assessment to rule out alternate explanations for what we are observing before drawing a conclusion.

As you obviously know nothing about it, it's probably better to keep schtum?

Lived

Being accused of being naughty when you’re not is shit. Undiagnosed autism is bad enough, a label of naughty you don’t deserve is even worse.Naughty is such a lazy expression.

@Snoozer11
Some parents are desperate for their children to be seen as "different", or "special". It gives them a chance to excuse decisions they've made that they regret, or an explanation of the perfectly normal behaviours their child exhibits, but which the parent doesn't like.

And your evidence for this whataboutery is where exactly?

This thread is about the OP's DD's symptoms and the way the OP may be able to help her.

You prattling on with uninformed generalisations without any relevance to the OP isn't helping anyone.
FGS spare us all from the 'We are all on the spectrum somewhere and these parents only want a diagnosis so they can claim DLA and get a free car.

We've heard it all before, none of it is true. .

I’ve PMd you.

The way I explained it to DD2 was that all of the things that she finds difficult are because society expects certain behaviour/reactions and her behaviour/reactions are different. If society was different, she wouldn't have difficulties. Those difficulties have a name 'Autism'. Having a diagnosis means that she doesn't have to explain every little difference in the way she thinks/behaves.

I work in mental health, whilst she sounds like there are some ND needs there she will not meet threshold at this time. This might be why you're neither getting much response from ßxhool or GP. You can however still provide and support her needs, there are some great resources on the national autistic society website and barnardos run pre diagnosis parent courses that may be helpful. She also sounds like she may struggle with some social and separation anxiety. Seperation can be from familiar places ir things not just you as parents. Although she does nit wish for intervention at this stage, you as a parent can work through the Cathy Cresswell "helping your child's fears and worries" book or audiobook. This will give you the skills to be her "therapist" and help you both with the anxiety difficulties she is experiencing currently. Should she wish for intervention at any point then it would be worth asking school to contact their local children's wellbeing practitioner or education mental health practitioner, both which specialise in early intervention for anxiety.

I believe you @Nobodylistens you are her mum and you know her best.

@OutdoorHousePlant there’s no way you could possibly say she doesn’t meet the threshold based on a forum chat. It’s super unprofessional.

I don’t think it’s helpful for people to confirm it “sounds like” autism based on the OP’s posts. It might be leading the OP up the garden path and doing a huge disservice to a child.

What’s clear is that a parent had concerns about her child and needs a professional to assess and provide input. Of course she may well end up with an autism diagnosis but it’s super unhelpful if there is something else going on.

Basically, the “sounds like my X with autism” is unhelpful (although I appreciate the intention is kind) as “why do you need a label”. The latter is obviously ignorant and ridiculous.

I don’t think it’s unhelpful. She asked if anybody had been there. Some of us have and it’s a very lonely place to be.It is important to see how autism can present in girls.There is a lot of ignorance out there.It could well help stop future teenage mental health struggles. Op also needs to be alert that the vegetarianism is a concern. Autism and Anorexia are linked. Anorexia is hard to shift when autism is in the mix. New vegetarianism can be a red flag.

And what is a disservice to a child is autism being overlooked and not pursued for many years when it should have been.

This. Absolutely this.

To those who say that OP shouldn't seek to get a diagnosis for what they see as a personality trait:

• Personality traits don't cause a person to run (not walk) out of a crowded bar into the night alone because the noise got too much.
• Personality traits don't cause you to hide in the wardrobe because its the only way to get visual privacy from the sister you share a room with.
• Personality traits don't have you in tears at work because you said something that you honestly thought was perfectly reasonable and someone took offence and you are being accused of nastiness.
• Personality traits don't have you hide in the prayer room and only come out when someone needs to pray whilst on jury service, because you cannot stand the noise and the light and the people in the jury waiting room.
• Personality traits don't get you beaten up by the school bullies because you find it so hard to make friends that you are alone all the time and hence an easy target for the horrid little cowards.

To the people who think that a diagnosis isn't needed for autism:

• Whilst in theory, legally-mandated reasonable adjustments for disabled people are meant to be needs-based, in practice, disability is legally defined as "a physical or mental impairment" that has "a substantial and long-term adverse effect on [a person's] ability to carry out normal day-to-day activities".
• Without a diagnosis, the name or even the existence of the impairment cannot be demonstrated to the people who need to make the adjustment. Therefore the people who should make the adjustments don't, because they see no evidence that they need to make any adjustments.
• With a diagnosis, especially one in writing, the people who need to make the adjustments know that they must do so and could face legal action if they fail to.
• The points above mean that a diagnosis is not a label, it is a KEY that unlocks reasonable adjustments that make a disabled person's life easier.

To those saying that an autism diagnosis will cause harm by labelling the DD, I repeat what a PP said about the "naughty" label being far far worse. I remember on numerous occasions being sent to stand outside the primary school classroom and not even understanding what it was that I had done wrong. The sense of injustice caused me to cry uncontrollably, for which weeping, my sentence stood in the corridor was extended. Over thirty years later, the unfairness of it still hurts. Like other girls of the 80s, my autism was overlooked. A diagnosis would have helped me to understand why I didn't fit and why the world's rules made no sense. It might have made my teachers understand me better as well.

To the OP, frame the assessment as being something that could make your DD's life better. Ask her if a quiet room at school where she could be alone for a little while during breaks would make her school day easier. Ask her if having teachers and friends understand that she doesn't mean to be rude would make her school day easier. And if she says yes, you tell her that the assessment might get those things for her.

Sadly ime once there is a diagnosis there is no further help offered.

You are on your own. But at least you know what you might be dealing with and can get your own head straight to do battle with schools and tutors and enable your child to achieve their potential.

Push school for a referral.

Here is an extract from an email I sent recently asking for my Child to be referred....

"I am also very aware that ND in females, especially with a high IQ, is incredibly misunderstood and linked to an increased prevalence of eating disorders, suicide ideation, self harm and substance abuse so even if the school do not immediately have concerns I trust they will take ours seriously and support us to do the best for ddx"

Just an idea!

I also had to use examples and push the staff as to whether they had really not seen the behaviours we were seeing.

Also.... tell them how much effort is going on in order for the mask to fit....... explain how she prepares for the school day / week. How much time is spent on homework. Use a timer.

Good luck.

"Do you know how hard I work at seeming fine??!" needs to go on a t-shirt. It's true for so many people with a hidden disability.

Sorry to hear your child may need surgery.
Guys hospital in london has a special dentistry team that work with vulnerable adults often with various disabilities who have ignored their teeth / health to the point that a multi faceted medical team come together and they operate to resolve the issues and they do as much / little as possible during the one op.
(Used to have a friend who was a dentist in the team)

Worth chatting with The Guys PALs team to find out if there is a specialist anaesthetist you can speak to.