To ask on the AIBU boards about possible ASD signs

[Worriedmummmm]

I already know I’m unreasonable! Posting for traffic as I haven’t had much luck on other boards.

My dd has been recently diagnosed with anorexia. She has some traits which would have previously been diagnosed as atypical anorexia, but she has restricted her diet so severely she has made herself seriously unwell. She is ok with textures etc, it’s the calorie content she is concerned with; she feels she is overweight. She will eat some high calorie food, especially if it’s homemade, and others she will not tolerate due to the ‘calories’ in a way that is not logical. For example she had a (normal) McDonald’s meal but will not eat anything at home which is cooked in vegetable oil as she says it needs to be butter due to the calories. She is now underweight, from a healthy-but top end of healthy starting point, so has lost a lot of weight. Our clinician feels she is very underweight. (She is incredibly tall so it is really genuinely hard to tell. She is possibly one of the tallest for her age so BMIs etc are all irrelevant).

Since diagnosis, she has started to exhibit a lot of worrying traits and I am beginning to wonder if she has previously masked ASD traits. They have already queried this at the clinic, but other than a persistent issue with sound, she has always presented as emotionally mature, social, and extremely good at mediation. This was picked up on at school from an early age.

Now that she is talking, she has spoken about clothes not feeling ‘right’ - she says it’s not that they’re uncomfortable, they just don’t feel right. She constantly refers to feeling uneven, and she is really struggling with noise; noisy environments or repeated sound like a car alarm. She can’t cope with change over meals, and says that she is feeling totally overwhelmed, and doesn’t feel right inside her head. She has also taken to marching around the room and tantrumming. This is all different from her usual presentation. She is also struggling with her skin, picking at her hands until they bleed, and starting to wear jewellery so that she can fidget with it.

A lot of this I had been putting down to the anorexia, and have already discussed the marching and noise to the ED team. I am now worrying that actually she may be on the spectrum but just successfully masked until now. She does have the classic traits of successful maskers - she is bright and a perfectionist. But I can’t get past her other characteristics of being highly reflective, and incredibly empathetic, and genuinely so understanding of emotions, all of which she exhibited at a young age, ie too young to have learnt. She has younger siblings and is very understanding of their needs, and very loving towards them. I am not suggesting for a moment that ASD = lack of empathy and know, like all things that there is a spectrum. But I would describe her as very unusually skilled in this area. She had a massive (think huge, epic) tantrum in a neighbouring town when she was 2 and a half. After her nap at home later on that day, she brought it up, saying she was sorry she shouted yesterday, she was just so angry. She refused to go back to the town for at least a year, and also never had another tantrum, which ended about 4 months of big toddler tantrums.

Talk to me! Educate me, or point me in the right place please?

From what you have said, I wouldn't have thought it was ASD. Emotional regulation and effective communication and social skills are such a key part of an autism diagnosis. And it seems like your daughter is great in these areas. The two things you mention about stresses around clothes and food seem perfectly explainable by the anorexia diagnosis. In terms of reaction to noise, is this particularly when she is already upset or stressed by something else?

My eldest is autistic. Youngest not. The youngest is much fussier around clothes and how they feel and also food. But I am certain she isn't autistic as she is very emotionally intelligent (ie in tune with other people's emotions.)

People with ASD don't lack empathy - generally they can have good (or even advanced) levels of affective empathy but struggle with cognitive empathy. Autistic girls in particular can come across as mature in a "little professor" way.

However, it is also possible to have the sensory problems of autism without the other impairments, with Sensory Processing Disorder.

Obviously I do not know and couldn’t possibly suggest anything over the internet!

That said, I would at least take a look at ADHD and see if you feel that you could at least rule that out.

Don’t dismiss it based on what you think you know; really look into the different types and how they present in women and girls.

I was diagnosed at 50.

I would also suggest looking at how autism can present in women with lower support needs (what used to be called Aspergers).

What is obvious systemising in little boys (lining up trains, obsessive knowledge of niche subject) can sometimes be less obvious in girls, such as systemising social rules which can lead to the girl appearing much more socially competent than she is and being very anxious if someone else breaks the rules - this often looks more like a "good girl" than an autistic girl.

This is a useful checklist, obviously nobody ticks every box on the list but it is a good overview of how autism can present in girls https://the-art-of-autism.com/females-and-aspergers-a-checklist/

Noise - no. She has always had issues; couldn’t cope with the vacuum as a baby, hated a West End musical when she was 10 as it was too loud, very sensitive to ‘tense’ music on a tv (she will leave the room - she really doesn’t like it), found it impossible at the science museum. When she is stressed or upset noise is also a heightened issue, but it’s not only reserved for then

Sounds like ADHD to me as well as the ED and anxiety? She needs more professional help and referral for diagnosis.

Your daughter has sensory, communication, social and emotional needs which are greater than normal, therefore she is likely to be ASD. It is thought that anorexia is an ASD presentation in girls, alongside gender dysphoria and self-harm. Basically, girls tend to internalise their distress.

@TheodoreMortlock Thanks this has really chimed. She can’t tolerate rule breaking - to the point where she can’t watch a tv show where the protagonist breaks a rule. I will look at the checklist.

@TheodoreMortlock the “good girl” thing is very much me (and also my son!), we both score quite highly on the ASD diagnostic factors but not high enough to meet the clinical guidelines for diagnosis. Which I suppose is a good thing?!? 😂

Thanks all, I will follow up with the ED team and see if they can refer into CAHMS for diagnosis assessment. I just wasn’t sure what to be alive to, in terms of additional needs not addressed already with the ED.

Good luck @Worriedmummmm, I know from experience just how tough it can be seeing your child go through this. Fortunately she has you on her side. Don’t let anyone fob you off - keep pushing until you have answers.

BMI takes height into account.

I was reading around this as I have an ASD daughter and it is possible to be extremely empathetic and ASD (it has a name which I can't remember) so it is possible to be both. Girls present really differently to boys and so much new stuff is being discovered and worked out all the time.

It doesn’t take body structure into account. I look emaciated at BMI of 19.

ASD can cause hyper empathy to others - I would honestly push for assessment, if you can pay for a private assessment. ASD and ADHD are very common in anorexic girls.

I was anorexic for 10 years, and I’m only now understanding that a lot of my issues were due to undiagnosed ADHD.

What is very important for you to understand that the starvation effects will amplify everything for her. She will constantly be exhausted and running on empty/running on adrenaline, probably not getting enough sleep, and all of that makes everything 100 times more intense (try a harsh diet for three days and see how you feel yourself!). So any tendency to overstimulation will be amplified. Emotions will be amplified, her brain will be a big knot of emotions and worry and overanalysing everything and that’s where the tantrums come in. Starvation requires the brain.

https://www.shu.ac.uk/news/all-articles/latest-news/autism-and-hyper-empathy-study

DD2 (diagnosed autistic) is incredibly empathetic - overly so as she'll come out in tears of sympathy if anyone is remotely distressed, she's acutely sensitive to other people's emotions - also with a strong sense of right and wrong and desire to people please - so if someone's said something at school that's made a peer sad... she'll be off to follow the rules she's been given about what you do when someone's bullied and tell an adult because it's WRONG - TOTALLY WRONG!

I'm also autistic - clothes can feel "crunchy" to me or itchy labels that still itch when I've cut the label out - I often wear pyjamas inside out as putting the itchy bits on the outside makes more sense to me. Loud environments and ones with lots of movement - the noise doesn't hurt as such - but it just builds and builds a feeling of stress and unease in me in kind of "huge spider moving very slowly towards you" kind of way (it's difficult to explain) - if I put noise cancelling headphones on I feel a moment of sheer release and all that tension dissipates. When I'm agitated - I'm even more sensitive to noise and lose the ability most parents have to maintain different conversations with different kids simultaneously - my ability to process language goes right down and I also struggle to speak fluently at these points.

The best way I can describe the sensory stuff is - imagine if someone's fiddled with the settings on your TV - everything is suddenly a bit too loud, the colour's gone funny so people all look a bit orange and nothing feels quite "right".

As for female presentation - a lot of the fixed interests typical... girls fixate on stuff that seems more socially "normal".... like spending your summer break learning every single Taylor Swift lyric going.... or obsessive unicorn hoarding (both happened in our house) plus Pokemon obsession. Stimming can be things like hair twirling as well or twirly dancing for younger girls - again, society often misses these things... I have a finger tap pattern I do when I'm trying to regulate down - because I've learnt it's "odd" - I hide it with my hand in a hoodie pocket. We learn to hide things like eye contact as well - I learnt to look at people's noses and to mentally pull my eye gaze back to a face when it wavered. Masking is a huge part of the female ASD experience - and it's fucking draining mentally.

I found out I might have ASD from a Mumsnet thread many years ago. With me it mainly manifested as incredible untidiness, which has dogged me my whole life. I discovered it's called executive dysfunction.

I took photos of my kitchen and bedroom. Then I showed them to my GP. Within a month I was being assessed at the psychiatric hospital.

Like your daughter I have no problem with empathy, but like her there were cdiagnosed with tain clotahes/fabrics I couldn't tolerate as a child. Obviously once I was buying my own clothes it was no longer a problem.

I was diagnosed with ASD and dyspraxia. The diagnosis has made a lot of things make sense to me and lifted my lifelong shame about my untidiness.

It is possible to be emotionally very sensitive and available to others, but experience extreme emotional dysregulation yourself. I don't know whether it is ASD or ADHD or some combination, but it is extremely common in anorexic or bulimic girls, and this is very visible when you go to the clinic. One of mine prefers to go without a label though, so that's another thing to factor in, that independent minded girls with control issues may not want to go down the assessment pathway, or might not want to do that now but might in the future. I empathise, though, this is a hard path to tread.

I was diagnosed with autism age 46, I've also recently been very unwell with anorexia and have been in hospital for a long time. There is a strong connection between autism and ED's.

BMI isn’t used in the same way for children under 18. And isn’t as accurate at extremes of height, which is what I think the op means.

For under 18s with Eating Disorders, weight for height charts should be used, which are on the Royal College of Paediatrics website.

If your dd is willing, I would look into assessment based on what you say here.

https://www.eatingdisorderhope.com/blog/anorexia-ocd-link-between-them

just throwing OCD out there as a wild card.

you probably know but just in case you don’t- there’s a common misconception that it’s all about handwashing and cleanliness. It’s not. The comments about rigidness over calories, not feeling quite right & a few other things made me think of OCD

Thank you so much for all of this. Makes total sense and the way you have described the noise really clicks with some of what she’s said - she has said some it makes me feel: and then wriggles which I am guessing is that spider feeling you’ve described. Very uncomfortable but so tricky to put into words? It sounds so hard for you.

Yes thank you - I meant BMI for children which is derived from averages from children of the same age and height. My dd is too extreme for there to be 100 of her height at her age. She is probably taller than all of the adult women in our town for example, and is still growing. I am aware of the ED measurement but they have advised that this also isn’t too helpful; they think she is below that figure (of 46%) which would make her only slightly underweight. She really is very tall. So tall that I’m not putting her height on here as I worry it would out her. None of this really matters. It just makes it harder for her because she is comparing herself and doesn’t have those same visual cues to look out for, and everything online will say she’s not far from normal weight. At a glance she looks slightly underweight I would say; if she’s standing it’s not really obvious especially as there are plenty of other girls her age who are super skinny, usually due to them not hitting puberty (she did, years ago). However if you start really looking, it’s a different story. Her arms are ‘not that thin’ if you compare them to a child of the same age, arm for arm. They look the same. But if you think about the fact that it’s twice the length, so should proportionately be twice the depth, or look at her frame, (collarbone to shoulder) or hug her, that’s when you get the sense that she is really underweight. So I think this is what the nurse says when she says she’s really underweight, but it’s difficult to measure this due to her height. But suffice to say that she has a range of physical symptoms which are all causing immediate danger, hence why we’re in the position we are, and the diagnosis etc. And why I’m so worried and trying to make sure that all of her needs are addressed, asap

I just want to say that you've described me and DD exactly here (both diagnosed Autistic)

Just to add weight to the empathy issue more than anything as it's the misunderstanding I most hate about Autism.

Also to say to the OP, I hope you can push for diagnosis and your DD is on board.

With myself and DD, we were desperate for our assessments in the end, as we knew we were struggling. Diagnosis does bring with it a lot of self understanding and forgiveness.

Also to add that I agree about the prevalence of OCD / coping mechanisms in Female Autism, and therefore EDs etc. DD has struggled with self harm, and I used to hit myself before I had more understanding of myself. It's part frustration and part having control of something when all else feels out of control.