16 year old girl ASD

[ZZ28]

Hi,

My 16 year old daughter has recently been diagnosed with ASD after 3 years of school refusal and MH difficulties. Anyone else out there with girls who have been diagnosed late??

Would like to hear other stories...trying to learn and understand why it's taken so long for professionals to diagnose.

Mine was only diagnosed at 19 after 2 years of mental health difficulties and then only because I pushed for it. First GP basically dismissed it because she made good eye contact...

Autism presents very differently in girls as compared to boys and many of the 'signs' that people mostly wrongly attribute to autism centre on the male presentation. e.g. lack of eye contact, little empathy, lack of friendships, unusual obsessions.

Generally girls mask so much better than boys when they are at school or socially, which is why teachers and sports coaches don't notice them presenting much differently to their peers.

why it's taken so long for professionals to diagnose
When did you first suspect she was autistic and ask for investigations or interventions?
The NHS diagnostic process can take a very long time from raising your initial concerns. Again, depending on who was doing the assessments and if they were aware of ' female' autism. There's an awful lot of ignorance about autism in general and particularly about its presentation in women and girls. Smallblanket is not alone in being wrongly fobbed off.

Some women aren't diagnosed until Uni, others later on when for example they find the inferences and unseen communication aspects of work difficult to cope with, or even into middle age and beyond when they have known for decades that they are very different to their peers and would like to know why.

The upside is now that your DD has her diagnosis, you can request interventions are put into place at school to help her cope. Do see the school SENCO before schools return and see what school can offer her. Some schools are great, others are rubbish, if they aren't helpful, do consider finding a school that is.

Not sure if you're aware, but if she appears to be immature for her age, many kids with AN have an emotional age about two-thirds of their chronological age, which can explain quite a lot of their social difficulties when compared to their age-peers.

It's not just girls that take a long time to diagnose. We knew our son was autistic when he was 3. He wasn't diagnosed until he was nearly 8. Up to that point we had so called professionals telling us repeatedly he wasn't autistic or worse still, "there's nothing wrong with him, he's just naughty/rude/awkward/lazy."

I think some of it (a lot of it?) is down to professionals not being as clued up as they think they are about autism, and also, while it is true girls present very differently from boys, all autistic people present differently from each other. As Stephen Shore said, “If you’ve met one person with autism, you’ve met one person with autism.”

My Daughter was diagnosed at 6. Now a preteen it is very obvious in her mannerisms and social issues whereas when she was young she was quirky, different. I foresee the teenage years been a nightmare. She has defiance issues too it makes daily life difficult.
If her teacher hadn't of fought her corner then she'd probably be left behind with a diagnosis.

BlankTimes has given a good summary of why girls are later diagnosed.
They tend to be better at masking- and their anxiety tends to be greater as a result.

A good ASD assessment will be very thorough and therefore slow. So, it can take a long time to diagnose as you have to exclude any other issues that might present similarly.

Ellie is right it boys can also be diagnosed late too. Ds was diagnosed last year age 15. So little support when he really needed it has meant there are some real problems now.

zz hope things start to improve for your Dd.

My niece got her diagnosis on her 16th birthday. She was pinged out of the system a few times along the way with lots of wait and sees and no she doesn't quite fill my tick list.

My DD is ADHD / dyspraxic / anxiety - now 12. Going through an ASD assessment now. She was rejected after the form filling and I pushed back massively and got another oral assessment and now accepted for assessment. She scored 4/15 on their scale and that is because all the questions relate to behaviours at 3/4 years old when she didn't manifest any signs (and I don't think just masking) but definitely does now as the challenges of secondary / being a teenager make life hard for her and harder for her to cope. I strongly believe that the criteria / questions are wrong as it is not right that she was rejected on this basis - she so clearly is ASD. Something is wrong if all these girls are being missed.

Hi, my daughter has just been diagnosed at 15 years, after 3 years of MH problems. No indication of ASD before puberty, she seemed just a shy girl. Looking back she must have used all her intelligence and energy in deciphering social situations, and "masking". I imagine it's a bit like being in a foreign country for her - you know a bit of the language, but you're constantly worried that you won't be able to understand what someone says to you, and may get the wrong end of the stick completely and say something embarrassing.
Cahms seem to have finished with us now we have a diagnosis- they can tell us the problem but not help us with it. We are to receive a pack with contact details of local charities. I hope you find better support

@Thisisnoteasy I'm surprised you were rejected on the basis of behaviour at 3-4 years, as they should be aware that girls in particular often don't show symptoms until 11/12. I made it clear that my daughter showed no signs pre puberty. I did get the feeling they didn't believe me though. Good luck

@ZZ28 my dd sounds similar to yours, diagnosed with adhd at 14 and ASD last month at 16.
She had some sort of break down at 13 and she developed severe anxiety and school refusal.
I ended up home educating her for a year as the mention of school gave her panic attacks. She started a new school in year 10 which had excellent pastoral care and she finished school although her attendance was low around 65%.

I am worried about college as she now really struggles with meeting new people.

I always felt something wasn't quite right but she appeared fine at primary school and was very happy.

There were noticeable executive function issues at secondary, hence seeking adhd screening when the anxiety started at 13. School did not think she had it though and said her problems were behavioural.
I feel too much emphasis is placed upon how a child presents at school and children who mask can slip through the net.

The asd seemed to come on thick and fast after age 14 and it is now quite noticeable to family, although she appears neurotypical to others.
The second school were helpful with the asd pathway process as they saw the traits.

DD is 15 1/2 has dyslexia is very quiet and withdrawn, can’t hold a conversation, hates touching, eye contact, is young for her age, doesn’t have any interest in fashion/clothes, makeup, appearance, music, boys. I wonder if this is an issue for her she has found lockdown particularly hard.

Thank you for responding to my post. We really didn’t know pre-puberty that she could be Autistic and have felt bad for not knowing sooner.

We weren’t even sure until she was diagnosed! This extent of masking has caused huge anxiety disorders :( and we feel guilty that we were not informed and therefore lacked understanding!

We were surprised post diagnosis that we were just given the NAS website and local charity numbers. I had (naively) assumed that diagnosis came with support to follow. Of course I was wrong! Something has to change, it feels like I’ve been having to find my way in the dark for too long!

Don't blame yourself for not noticing, I work with autistic children, know all the signs but didn't spot anything until she started self-harming at the age of 12 due to anxiety.
Post diagnosis was a bit shocking for us too, it was a case of take the list of local charities and contact them. No other help. I'm currently trying to have inaccuracies in the diagnostic report corrected, and look for private help / therapy if it exists. Let us know how you get on or where you get help from, I'm another one trying to find my way in the dark.

Thank you for sharing your experience. I’m glad she found a new school. Unfortunately we were not so lucky and had to home educate (of a fashion). I have now (nearly) secured an EHCP to help with college but no idea how she will transition from home to college (I fear she probably won’t). I find it fascinating that girls can appear neurotypical for so long. Anxiety is the red flag but it all got too much very quickly without time to put things in place before it became complete school refusal!

After 16 months we have finally reached the top of the CAMHS autism waiting list! Fortunately we were able to secure a private assessment in that time because unfortunately DD's mental and physical health was deteriorating so badly that we couldn't wait for CAMHS.

@ZZ28 I was surprised too that CAMHS offers no post-assessment support - apparently in the adult mental health service, they offer some support to help you manage "in real life". For under-18s any support is to come via the school setting. Sigh.

We are still struggling with the autism aspects of DD - it's like a whole new language to learn, in trying to understand her thinking and how to communicate with her. I often feel like we're failing her, despite all that we do for her. And in breakthrough moments, when she can express what she's thinking or feeling, it breaks my heart that she finds life so difficult and inexplicable.

And yes, the guilt! Of not noticing in the first place, of not knowing, of still not knowing how to adjust my behaviour to help her