Autism in girls

[holewheetflower]

I know the 'basics' - that autistic women and girls are generally better at masking and so can miss out on diagnosis; that autism 'looks' different in girls than boys in many ways... I also know the whole if you've met one autistic person then you've met one autistic person concept.

I'd just like thoughts from those who have more insight / experience / knowledge than I do about whether it might be worth exploring a possible autism assessment for my daughter.

She's 5yo and was born extremely prem. I mention that because sometimes the oxygen treatment can have neurodevelopmental effects separate from autism. Paternal grandfather almost certainly autistic. Paternal uncle and cousin, and maternal uncle all have diagnoses.

She definitely fits the 'highly sensitive' criteria. Can't bear loud noises, particularly beeps or shrill / higher pitched sounds. She has physical reactions - heart racing etc - to these and gets quite panicked. Extremely sensitive to taste and texture; can pick out individual fruit flavours in juice / yoghurt etc. I reckon she'd make a great sommelier one day. Very fussy eater. Loves cosy snuggles; very sensitive to cold, but no sensory preferences RE clothing / seams etc.

She taught herself to read around 10 months ago (she's home educated) and is currently reading The Ikabog, so advanced reading age; she reads obsessively. I think 'behind' National Curriculum stages for maths - e.g. still getting her head around coin values; manages basis addition up to 20 but struggles with subtraction and division.

Loves to draw and write but immature compared to peers (partly due to delayed skeletal development associated with prematurity).

Loves to play energetic physical games with boys. Imaginative and role play but usually about animals / dinosaurs / characters. I've never seen her play princesses / families etc. with other girls. She doesn't connect well with girls her age but does love older girls. She's the sort of child you might call 'quirky'; she speaks in quite an adult way which feels a bit unusual.

She has interests that are intense but varied. She loves whales and spouts facts about them, for example, but she's also interested in space, dinosaurs, sea life in general etc.

She doesn't cope well with changed plans or unpredictability.

Struggles to feel sleepy / fall asleep at night. Only recently out of nappies at night (5yrs 8mo).

She's very empathetic and feels her emotions very strongly - though I suppose what 5yo doesn't to some degree?!

This is an essay. I'm sorry - I've just braindumped it all. I'd really appreciate insights from anyone who has made it this far!

I don't have any particular advice, but one thing I do know that might be of interest to you (since you mentioned her sensitivity and empathy) is that although autism is associated by people with a lack of empathy, a lot of autistic people actually feel very strong empathy. To the point that empathising with others' suffering causes them actual severe distress and pain, and it can be really overwhelming for them. They can and often do care very, very deeply about others and want to help. Where many people with autism tend to struggle is expressive empathy, which is knowing how to show someone they care, and often predictive empathy, which is knowing how somebody will respond to their actions. So someone with autism may hear that their friend's dog has died, feel their pain very deeply, care very much for them and want to help them, but be unable to express that in an appropriate way. Perhaps they therefore don't say anything to comfort their friend and to others that can look like they are cold and uncaring, which is far from the truth. So don't let her empathy necessarily be a point against the possibility of autism. It can be a symptom.

I definitely think it would be worth pursuing a diagnosis for your daughter if you think autism is a possibility.

This all sounds very like me as a child. I’m currently being referred for an autism assessment (aged 30).

There were huge flashing warning signs when I was a child but my parents view them as ‘hilarious’ quirks and stories to tell, and they were outraged when my younger brother’s primary school felt very strongly that he was autistic. Neither of us were assessed as children.

Thank you for your replies.

Yes, the sensitive / empathetic thing is a possible 'for' autism in my head - mainly because she has an autistic friend (another girl) who is like that but to a bit of a greater degree perhaps.

@amusedbush thank you for your reply. Would you be willing to say a little more about your experience? Do you feel an earlier diagnosis would have been helpful for you?

I agree about the empathy. I am autistic and was diagnosed aged 40. If anything I am probably over empathetic and very tuned in to people’s feelings. It greatly distresses me if someone else is even slightly upset. The problem is that I struggle in knowing how to express this, but the feelings are there.
Sounds like it is worth looking into getting a diagnosis for your daughter and what a lovely mum you are for reading up on this. Even now, so many girls get missed. An early diagnosis would’ve helped me enormously so if she is autistic you are setting her up for the best possible start in life.
Happy to answer any questions you may have

@holewheetflower

Thank you for your replies.

Yes, the sensitive / empathetic thing is a possible 'for' autism in my head - mainly because she has an autistic friend (another girl) who is like that but to a bit of a greater degree perhaps.

@amusedbush thank you for your reply. Would you be willing to say a little more about your experience? Do you feel an earlier diagnosis would have been helpful for you?

Yes, I definitely do. I was horribly bullied for being ‘weird’ and I’ve never felt like I’ve fitted in with anyone anywhere. I struggle with a lot of day to day things (sense of direction, verbal instructions, social anxiety, rigid routines, misophonia, sensory issues) and I think it would have helped me to make peace with myself if knew that these ‘quirks’ had a central cause.

I have coping techniques and I mask quite well (though I’ve still been called odd as an adult ) so I didn’t feel like pursuing a diagnosis would be beneficial for me until now. Nothing has really changed but I just want some answers in black and white.

Thank you so much @EssexLioness. 'Tuned in' is such a good way to describe her sometimes.

I'm quite a level person, but I've noticed when I'm a bit stressed or mildly irritable, she's completely tuned in and it seems somehow anxiety provoking for her. I'm nowhere near a shouty or stomp-around sort of person so I don't think she's actually distressed by anything I'm doing, it's more the feeling she is picking up from me. She'll say "Mummy I love you" and needs me to say how much I love her and give cuddles and reassurance - it's like she needs to check out that everything is OK because she's sussed that I'm off-kilter. Does that resonate with your experience?

Would you be able to say a bit more about why you feel an early diagnosis is helpful?

Another adult-diagnosed autistic here! Sounds like you’ve done loads of research and from your description I would say it’s definitely worth looking into a diagnosis for her. Just knowing that certain things aren’t character flaws and are just because I have a different brain has been so life changing for me, I always thought I was lazy or just wasn’t trying hard enough when I found it difficult to cook a meal or keep on top of housework etc. It’s helped me to find new ways to do things now I’m not trying to do everything the neurotypical way!

I also agree about the tuned-in thing. I feel definite ‘vibes’ from people and if they are slightly off, it increases my anxiety. If my husband is grumpy I find myself trying really hard to bring his mood around and I need constant reassurance that he’s not pissed off with me.

It’s like I take all bad moods as personally directed at me and it makes me very anxious.

I would say that if you have even the slightest concern that your daughter might have autism then start the process now.
I say this for a number of reasons-

1. It’s a VERY long process made worse by the whole backlog caused by COVID.
2. If your girl is good at masking the school might not see what you see, we had this issue and it’s made getting a diagnosis even harder. We started the process in year 1 and were dismissed by the person doing her first assessment because school couldn’t back us up. It’s only now that she’s in year 4 the school are seeing issues.
3. You do not want to leave things because she seems ok now and then be trying to get an assessment later on down the line if things get worse. Trying to get a diagnosis for an older child or teen who might be reluctant, embarrassed, hormonal etc is going to be much harder than doing it now.
4. Hand in hand with number 3, there is a lot of information out there (and I hope this doesn’t scare or upset you) that suggest girls with autism have a really tough time as teens, there are links with eating disorders, mental health problems etc. If she has a diagnosis there will be more of an understanding about why these things might be happening if god forbid they do.
5. There really isn’t much support out there for autistic children, especially girls and especially ones others may consider “high functioning”. Getting a diagnosis now will allow early access to what is out there and will make it easier to seek an ehcp if you felt she needed one.
6. Finally and probably most importantly it will help your daughter understand herself. My DD currently couldn’t give one shiny shit what anyone thinks about her, but I’m starting to see that changing as she gets older, she’s becoming more self aware and she’s realising that she sometimes feels and acts differently. Until we finally get a diagnosis I can’t hand on heart say to her “you feel like this/behave like this/do these things because your autistic”. If I was wrong I’d never forgive myself, I’m 99% sure she is and the school and people who know her well agree but I need that diagnosis before I can say anything to her and she needs to be able to put a name to what she feels and learn to understand it.

Lots of what you’ve written sounds similar to my daughter, lots doesn’t but as you said “one you’ve met one autistic person you’ve met one autistic person.”
I wish you and your daughter the best of luck with this journey.

Another adult-diagnosed woman here, and your daughter sounds a lot like me when I was little. I still go up to DH (but only DH, can't stand touch from other people) and demand hugs and reassurance on a daily basis Like @amusedbush I was horribly bullied for being 'weird' and really struggled to understand why I was so different / why people didn't see things the same way I did. I have had huge problems at home and with relationships, and I still do - meltdowns, shutdowns, all sorts. I honestly don't know where I'd be without DH and I'm incredibly fortunate to have met him.

An earlier diagnosis would have helped me in many ways (mostly social - I ended up in some horribly unsafe situations with men, because I had no clue and no ability to fend for myself), but I do wonder whether I would have achieved as much professional success (and therefore ongoing financial stability) as I have if I had an earlier diagnosis. Because I was bright (like your daughter, a very advanced reader), expectations have always been high. Despite several difficulties, I managed to find my niche, pushed myself really hard (at personal cost at home) and have now ended up in a part-time senior job that is a perfect fit for my ASD and comes with a brilliant salary (even prorated I'm a higher rate taxpayer), due to the niche expertise I've built up whilst struggling through the last ten or so years of my career. From what I have read it is more common for people with ASD to be in low-paid or no employment. I have already decided that if this job comes to an end, and I have to find something else, I won't be disclosing my autism until after the interview stage - nearly all the jobs in my niche have line management responsibilities and there is still a lot of misconception out there about what ASD entails.

On balance, I think a diagnosis would have been more helpful earlier than later, but I would hope that my parents and schools would still have pushed me to achieve my best; not sure how it would have worked with employers TBH.

I need to go and get some sleep but @PinotAndPlaydough points 4 to 6 are really important. I had an eating disorder when I was a teenager and became very unwell. It stopped one day, but not because of any treatment I'd had - in fact, I was completely unable to communicate with my GP, or the counsellor (who discharged me because I wouldn't speak with her ), or anyone. One day a switch flicked in my brain and I started eating again... proper targeted support would have made all the difference.

And being able to understand oneself and balance the 'cost' of different interactions or activities against the finite amount of capacity to deal with those things really helps keep me on an even keel. Before I'd push myself because 'everyone does this, it's stupid to find it hard', and I'd just push myself into a worse state. I'd come home from work early on Friday and not see or talk to anyone until Monday morning, some days I wouldn't leave my bed or eat properly, I'd ignore calls on my phone etc. Now I'm much better balanced because I don't overload myself. Diagnosis helps with this.

@EssexLioness

I agree about the empathy. I am autistic and was diagnosed aged 40. If anything I am probably over empathetic and very tuned in to people’s feelings. It greatly distresses me if someone else is even slightly upset. The problem is that I struggle in knowing how to express this, but the feelings are there. Sounds like it is worth looking into getting a diagnosis for your daughter and what a lovely mum you are for reading up on this. Even now, so many girls get missed. An early diagnosis would’ve helped me enormously so if she is autistic you are setting her up for the best possible start in life. Happy to answer any questions you may have

Yep I have a young relative who is likely autistic and the over empathy is a big thing, also the sensitivity to noise and a few other things you mention.

Worth an assessment I’d say - you may find they they it’s inconclusive and to come back when she’s older.

I would definitely seek an assessment.

DD2 comes across as incredibly anxious and a worrier because that’s how her ASD manifests itself but she ticks many of the boxes you have described as well.

I agree with other PP's about empathy - my feeling is that there is often too much, and the struggle with processing that means it is can be expressed in an awkward way or even precipitate a shutdown (which could look like a lack of empathy).

If you intend to try and get a diagnosis through the NHS it can take years. You might also find that you are told your daughter is borderline/just has traits. With one of our children we had a few other diagnoses first, diagnoses that we didn't agree with and meant that the wrong help was offered.

You may want to start using ASD parenting strategies in any case and see if they help, and can perhaps take a watch and wait approach for a year or two. However, the transition between primary and secondary is often when a child who was managing and masking falls apart.

I also think it is terribly important for neurodiverse children to have an age-appropriate understanding of their ASD.

She sounds a lot like my DS who was diagnosed aged 5. He doesn’t necessarily present ‘typically’ but over empathises, has trouble managing his feelings and responding appropriately (laughs at others’ physical pain or becomes distressed, or has a meltdown when overwhelmed by a situation).

Hyperlexia (extreme early reading ability) can be correlative with autism, also fussy eating, especially what I would call ‘supertasters’. My DS is sensitive to taste and smell. He often sniffs me. I’ve got used to it.

with asd the one thing they will say is maintaining things the same & having difficulty switching from one thing to another.
My dd (age wise mature not & never will be in reality)hoards she hates getting rid of anything - she has very fixed ideas & will talk round & round & round her decisions (slow processing issue) some have issues about restricting the variety of their diet or the amount of food they eat (a way of controlling their environment) or the opposite not be able to control their eating - some have minimal living & are obsessively tidy -mimicking OCD. DD is in most ways quite childlike & yet she is very intelligent & extremely computer literate (& extremely patient helping her computer dumb dm! - she is our family go to for IT!)
She can get really upset in a child like way when things overwhelm her & it takes time to get her to calm down (not angry she isn't like that) she is loving & cares about people.
Op make a log of things for a week or so & anything that is relevant - from getting up in the morning to going to bed - does she have any routines? does it upset her if her routine gets upset do you have to prepare her for changes? what about the clothes she wears?

Thank you all so much for your responses. It's definitely leading me towards exploring the assessment process for her.

@mumwon - she tends to wear 'boys' clothes for practical reasons. She loves big pockets, for example. She gets very attached to clothes and upset when she's outgrown them. But nothing unusual about seams or anything like that.

She has routines and will be unsettled if they're disrupted, but I suppose I feel unsure of how much this is just quirky 5yo-ishness. For example she likes to be dried a particular way after her bath, she'll be upset and unsettled if it's not possible (because I'm baby wrangling or whatever) but won't have a tantrum / meltdown.

Switching between tasks is a big issue for her. I hadn't realised that was something associated with asd. If she's reading and we need to start getting ready to leave, for example, even if we're going to do something fun, she can get quite grumpy and out of sorts. I give her lots of notice and a countdown and do try to keep the flow of our day predictable which helps her.

The thing to remember about ASD is that some children only display one or two traits, but that those can be significantly detrimental to their ability to function according to generally accepted social ‘norms’. Some everyday things can be very much more difficult for them.

We have issues transitioning between activities, and also get fixated on minor transgressions.

Your point about 5yo-ness is valid; the younger a child is, often it’s harder to tell. As my child gets older, this side of him is easier for me to see. He’s a combination of being very academically able, and very emotionally immature. He is very literal and takes things at face value. He is honest and truthful (he cannot lie), very earnest, and also very gullible. He has a lovely innocence about him.

What you said about her being unsettled but not having meltdowns etc - I rarely had a meltdown as a child, if ever, because I just happened to grow up in an ideal environment for an autistic person despite being undiagnosed. You are already using strategies to help her, so although she finds it difficult, you are supporting her to deal with these things and she never reaches meltdown/shutdown which is brilliant.
As an (undiagnosed) adult my mental health declined, my stress levels rocketed, and I started having meltdowns. Now I’m diagnosed I know how to shape my environment to avoid these things. It’s all about the support you’re giving her which sounds wonderful