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?

It’s important to understand that autism is not a personality trait. It’s not being shy (though you might be) or being selfish (though you may be worse at hiding it if you are).

No one can reassure you over the internet- but trust your gut instincts.

Start with gp referral to a paediatrician or child psychologist.

A good one will listen to your observations and do a full history.

No, I don’t have a list or any idea where to get one. It was a surprising thing I was told and was written in my DDs assessment which was just two months ago? She’s sent the assessment report to the GP asking it to be added to her medical records and to be referred to CLASS (adult autism service here) so we can get more assistance and this is one of the items we have listed for follow up.

She definitely sounds autistic to me. I don't understand why you're not getting anywhere with anyone. Could you fill in one of those online test things and take it to your gp to show how she rates. Quiet autistics are easily missed.

The mentality of "it's not me it's everyone else in the world" is 1. Very common in autistics and 2. Very important to break if she wants to succeed in life.

Trust your gut! I knew from age 2 that my child wasn’t growing properly but no one would listen until they were 6. They were by then 2 years behind and had fallen off the growth charts. Turns out I was right all along and they have a pituitary condition which needs treatment. I knew from age 3 that my other child was neurodivergent but their presentation was unclear. Childminder agreed with us but nursery said they couldn’t see it. Reception teacher agreed something was off and referred to SLT. Year 1 teacher said he saw nothing. Year 2, my child started struggling badly in school so it became more obvious and they got referred. When in year 3 (because waiting lists are so long) they were diagnosed with ADHD then 6 months later, autism and 3 months later, dyslexia. You are your child’s expert and advocate. If something feels wrong, it probably is. Good luck!

Very many thanks @Discovereads

I'll keep googling and not derail the thread.
This list is interesting, but it's American where they tend to medicate autism and its co-morbids.
www.autism.org/adverse-drug-reactions/

I'm interested because it's being suggested my adult DD may need surgery so I was going to find out about local and full anaesthesia and how it could work differently in autistics.

If you ever do find out any more, please pm me.

Ok, have made a note to pm you if I find out anything. Thank you for the link. I can see why it’s a pressing question for you since your DD may soon need surgery. I hope she is or will be ok. 💐

I think you need to push school. Unfortunately because girls mask, CAMHS are rotten at diagnosing them. I raised autism twice with CAMHS in the past and both times was assured DD absolutely wasn't. She is now 16, was unable to return to school post Covid, having loved the lockdowns way too much. The autistic behaviours are now really clear but the waiting list is four years in the neighbouring local authority so we're probably in it for the long haul. Good luck OP

Her traits might be different to the norm, but that doesn’t make it autism, to be honest some of that sounds like me, I am 52 and have never had or needed a diagnosis of anything. If other people are not seeing the signs, well could it be because they are not there.

Schools cannot ‘diagnose’ what they do not see. Telling them the child is masking is of no use, they can only then say ‘ parents say…’ which will not add any weight to the request for assessment. Best to try GP or private route.

@NeedAHoliday2021
Rather than worrying about a diagnosis (Although you can obviously apply it’s not speedy) my advice is that there are many personalities that sit somewhere on the spectrum and it’s our role as parents of non conventional dc to give them the learned skills they need

Excuse me putting on my lecturing pants but ffs. Yes, being the parent of an autistic child is about modelling behaviour but it's also about recognising that the behaviour might seems alien or pointless to an autistic child. It means understanding and accepting their limitations - and there are limitations, you can't just teach them skills to de-autistic them and teaching them to mask effectively is a hugely double edged sword. It may make other people more 'comfortable' but comes at an enormous cost to the autistic person doing it.

Autism is not a 'personality' as others have said it is a life long neurological condition which causes severe difficulties even for those deemed to be 'high functioning'. The spectrum is not a line where some people sit at the bottom and others at the top. To even get a diagnosis means you having significant difficulties that are recognised by a team of medical professionals.

Getting a diagnosis for our two autistic dc was the best thing we ever did. They now understand why some things are tricky for them when everyone else seems to find it easy. They know what to do when they become overwhelmed because they understand what is happening. That doesn't mean they don't have meltdowns but if they do, we can reflect afterwards on what the causes are and work out a plan to try and stop it getting to that stage. A diagnosis is not a label, it's an explanation. It also allows access to more support in school, more understanding, extra time in exams, being able to sit exams in small, quiet rooms if you can't cope with big halls etc.

OP, stick to your guns. My dc's schools did not pick up their ASD because they were bright and good at masking, this got them through primary but at secondary they started to unravel as everything got more complicated and it became clear there was something going on. If you can possibly afford the private route, do that. Some psychologists will do a pre-assessment appointment (which is £100-£200) with your dc, after which they can advise you whether they consider it worthwhile having a full assessment. It may not be that your dd is autistic but it's worth seeing someone who knows what they are talking about. If they don't think your dd is autistic they may be able to offer other suggestions as to how you can help her. Good luck!

@Nobodylistens come over to the special needs board, where you won’t get some of these responses. She sounds like a classic autistic girl to me. Have a look at the Autistic Girls Network on Twitter, they have some great resources.

My dd has some traits very similar to yours. Her primary school never picked anything up other than at times she spoke a little robotically. Exceeded her age in most areas at primary school but I saw she did have meltdowns over a few things and developed some be rigid routines which she said made her feel more comfortable. Eats very bland food. Hypersensitivity to noise.My job involved working with autistic children so I recognised some neuro diverse behaviours. Many primary schools miss autistic traits in children so don't rely on

I paid privately for an educational pysch assessment who then recommended an autism assessment. My dd is in top sets for everything at secondary school and schools often don't pick up signs of autism with girls as they can mask so well. I'm so glad she was diagnosed before she started secondary school. Navigating life as a teenager can be hard enough as a neuro typical child but a lot more difficult as a neuro diverse child. By having a diagnosis she can get more support at school with any problems or areas she finds hard to navigate.

I have OCD myself. My DS has autism, and I work with children with Autism daily.
my DS has finally been diagnosed at the age of 15. I’ve been asking his teachers etc since he was SIX but they weren’t seeing the same behaviours I could see at home. It wasn’t until he was 12/13 that it became slightly more apparent at school. He masks like a female “typically” would so it took a long time for his teachers to really see any of his struggles- I don’t think you’re being unreasonable at all @Nobodylistens .
can you ask for a meeting with the SENCO and detail the behaviours you’re seeing at home? See if they can offer an educational psychologist evaluation? I would hope any SENCO worth their weight would understand that your DS displays entirely different behaviours at home and you know her better than anyone xx

She will benefit from a diagnosis, the fact she is against it could be problematic but if you leave it longer then the resistance is very likely to be worse. I would pay for a private assessment as the NHS will take years and they such long waiting lists that it’s difficult to get on the pathway and progress when they are not “struggling” at school. Will you get any help from a diagnosis probably not but you can find help with the National Autistic Society and other groups.

My DS was diagnosed at 10. He has lots of friends (but no close friends) and is charming and very articulate but this doesn’t mean he is not autistic. He began school refusing at 10 and was highly anxious. He is happy he knows why he struggles in some areas of school and life. Getting the right secondary school is key in my opinion having his diagnosis helped us chose the right school. He is flourishing as much as an autistic teen can. Pets are really important by the way.

Things go wrong often in the teenage years for autistic kids please get a diagnosis for her own mental health. Both me and DH are obviously autistic and neither had a diagnosis and it would have really helped us. Both of us are highly educated but would have been more successful but choosing different career paths and happier if we had been diagnosed.

Your DD sounds so like mine that I could have written your post many years ago.
My DD1 is NOW going for formal assessment for ASD... she's 30!

It was bloody obvious to us from a small child... highly anxious, highly obsessive, food restrictive (nothing could touch either and very limited diet), didn't 'get' other people. But she was very clever and in the younger years no problem at school. She was dx with ADD but that was it. Hypersensitive to sound, to textures to just about everything. Very rigid thought patterns.

Life got harder as she got older. She developed anorexia in her teens and while she made it to University she became so ill she nearly didn't make it though. She was a bit of a nightmare to teachers by 6th form as she was very bright but not very cooperative !

Eventually she wound up under adult mental health services (and eating disorder services). She will always need some support and it was those support services who finally suggested she was autistic and should be referred for formal diagnosis.

Her brother was diagnosed as a small child as he is less able and more obvious apparently, though to me they present incredibly similarly.

Girls get overlooked all the time unless they have severe learning difficulties as well... I work in Special Ed and see it all the time,

I think you SHOULD pursue it.. and don't give up. I think my DD1 would have found like a bit easier with her difficulties labled.

(On a happier note however... my DD1's intelligence and determined mind set has meant she is doing the career she decided on aged 4... she's a doctor and a very good one...!)

God she sounds so like my daughter who has been diagnosed with autism at 17 after big struggles with mental health.Girls are being hugely let down as regards being diagnosed with autism. It makes me so angry. There is so much ignorance surrounding autism in girls as illustrated on here. There are many possible traits so autism can really vary in how it presents thus saying no language delay yup nothing to see here is ridiculous.

Girls can mask for years and then fall apart in the teenage years. They don’t get picked up because diagnosis historically has been focused on how it presents in boys and in girls it can cause less hassle for schools.It’s so wrong and a false economy. My daughter is one of many late diagnosed autistic girls who ended up self harming and then with Anorexia causing her to be hospitalised multiple times.

Keep pushing op. Without trying to alarm the vegetarianism worries me. My Dd got fixated on this and it turned into Anorexia which is then very hard to shift with autism in the mix. At the very least try to keep her food intake up.

I really feel for you. I’ve been there and wish I’d pushed harder.💞

Push for an assessment follow your instinct, I had to. I told school when DD was aged6 I thought she was autistic got laugh at by HoY… literally. Age 10 we got a private diagnosis of ASD as the pathway backlog post covid was 3yrs. We were desperate to get more school support in place for secondary. It was £2k and it’s helped us to keep pushing with more conviction. She’s in a supportive secondary school now and the first term has been a rollercoaster but they are supporting her and “believe” her with that bit of paper! Primary school just saw a quirky anxious bright girl didn’t believe us at all even when her mask fell of by year5 multiple times at school.

Because you haven’t got a diagnosis?

She sounds almost exactly like me at that age except I had even more hang-ups and eccentricities like not being able to eat in public because I kept thinking about the germs in other people’s mouths spraying everywhere as they were talking.

I turned out more or less fine, just a bit odd. I still find 95% of people just about tolerable (I don’t dislike them, I just don’t understand them and find their company draining). I do have some mental health issues and autism has been suggested but I don’t think pursuing a diagnosis would ever have been beneficial. So I’m inclined to say let your daughter be how she is unless it’s affecting her ability to function in daily life.

I have an autistic adult son. The diagnosis is useful. He now knows why he is different. He was diagnosed as a 7 year old. He knows he's autistic and fully accepts his differences. He's a well adjusted adult , married , job , independent. It was a relief to us all when he got his diagnosis.

Your dad sounds very similar to my ds is so many ways - including the things she says.

My ds is autistic. Text book high functioning autism camhs told me. (Although I hate that expression but it just means high IQ).

I agree with trying to get a private assessment if you have the funds. Find someone who specialises in diagnosis autism in girls.

And ask the school specific questions. So where does she eat at school? Does she sit alone or with friends in the hall? Quite often they don't see things as an issue but as part of a bigger picture they do have meaning.

Also have a look at the girl with the curly hair.

It's such a shame no one spots these things in girls as easily as they do buys until they have a complete mental breakdown.

I'd still insist that GP makes nhs referral. Then I'd pay to see that same nhs consultant privately. And once seen privately it gives you weight/ evidence. Then you await your nhs appointment.

Look up all the criteria. Make lists. Go in well prepared.

Schools often fail to see anything, insisting that they are 'fine'. Getting them to do anything when they refused to see it and acknowledge it is incredibly hard.

But you can do the donkey work yourself. By reading good books. There's loads of good books now re girls and masking. And helping her find coping strategies.

(Although very old fashioned ds particularly liked : The Asperkid's (Secret) Book of Social Rules
Brian Bojanowski. )

And I liked the • The Explosive Child
• A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children


• By: Dr. Ross W. Greene).

Could she be highly sensitive (rather than autistic necessarily)? Look up Highly Sensitive Person or Highly Sensitive Child

Maybe because she isn't?
Get an assessment OP.