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?

That makes sense, OP. The height for weight charts are different from the centile charts you’re referring to here, there’s a calculation for IBW (ideal body weight) for weight and height, and the MEED (Medical Emergencies in Eating Disorders) checklist lists a red flag as below 80%, amber as either 90% or 85% (I can’t remember which)… amongst other physiological measurements. I don’t know if that’s helpful to you, as it wasn’t your original question.

My dd is 5ft 7, which isn’t an unusual height - but she has been 5ft 7 since she was ten years old. So I have also thought in previous years that the centile charts were useless for her.

Thanks that is helpful. My dad really does have an idea that everyone wants to make her ‘fat’ 😫

And yes sounds like you have experience; she wasn’t far above your daughter aged 10; just when we thought she was stopping growing she hit her growth spurt and just hasn’t stopped! It is so difficult when they are tall children I think because if they are a healthy weight they are miles apart from their peers. I remember when she was aged 8 and wearing size 8 adult clothing. She looked (and felt) huge next to her peers but at F5’6’’ obviously wasn’t, and was perfectly in proportion.

Just to echo what others have said about empathy: I have ASD and so does DD, and we both have hyper empathy and high levels of emotional intelligence (I just miss signs sometimes, as my ASD means I don't pick up on some social cues). It's a very great misunderstanding about how ASD in particular presents in women and girls - we do have empathy.

I was also a people pleaser, very 'good' at school, so much so that my diagnosis came when I was 49!!

The clothes thing resonated: clothes have always felt 'wrong' to me, too. I thought that meant I was wrong, somehow, and thus internalised it as me being 'fat' or 'misshapen' and developed an eating disorder as a teenager. Realise now that it's my ASD. I still can't quite articulate what clothes feeling wrong actually means but it's still something I feel (but now I just ignore it).

I wonder if that is part of the issue behind my DD’s eating disorder. She was head and shoulders taller than her peers at primary school. Like you say. She stopped growing early and many caught up but she had size 8 feet at the age of 9. And wore adult sized clothes. She also hit puberty earlier than most.

My dd is likely to be autistic, but refuses an assessment atm. However, I recognise signs in what you describe ( my other dd and I have the diagnosis, and dd3 is on the pathway).

Just to add my voice to many pp. Autistic people are often hyper empathetic. Both my autistic children (boy and girl) are hyper empathetic and hyper sensitive, and usually wonderful with their siblings. Many bright children with ASD can still be adept at navigating some social situations, because social graces and behaviour is often a learned skill.
I would most definitely be looking into an ASD assessment for your dd, based on your posts. A very large percentage of girls and women with eating disorders are neuro divergent, often undiagnosed. Be aware too that ADHD and ASD traits often overlap, and many females with autism are wrongly diagnosed with ADHD.

My 7yo dd is being assessed for ASD/ADHD. A lot of what you say about your dd resonates with me. My dd is highly sensitive and very well tuned to the emotions of others. She has a lot of OCD behaviours, tactile sensitivity (clothing mostly), misophonia (which is heightened when stressed), performance anxiety and emetophobia. School didn't pick up on anything, she's a little chameleon with all the social skills and outward confidence of a neurotypical child. She masks. It has a massive impact on mental health, as I'm sure you're aware. My dd reached rock bottom aged 6, she had a total breakdown resulting in school avoidance (indeed she was unable even to get dressed at one point). You're absolutely right to consider neurodivergence. Please fight for any and all support you can for her. Good luck.