The link between autism and eating disorders

[WarriorN]

Links to autism and eating disorders

Discussing sensory issues.

'We need to treat eating disorders in autistic people'

https://www.bbc.co.uk/sounds/play/live:bbcradioo_fourfm?partner=uk.co.bbc&origin=share-mobile

I'm posting here as there are similarly high rates amongst those with gender dysphoria but the treatment and discussion is so very different, obviously.

And yet GD is known to be "the new version of an eating disorder"

It's also been observed in clinics for treating patients with ED that they often take on trans identities, which I know Professor Michele Moore said was a result of social contagion.

Hadley Freeman makes many analogies in her writing / book too.

Not one of the people who are on the autism spectrum in my extensive family, myself included, like the word autistic. We do not ‘identify’ as autistic first. We are multifaceted human beings of which our being on the spectrum is one of (or, in fact several) facets. We do not chose to be defined by our autism diagnosis, but seek to understand how it - and the co-morbid diagnoses of ADHD amongst others - interacts with all our parts and helps shape us into the whole person each of us is.

I am not autistic - I am a fully developed, complex individual of which my AUDHD is but a part. At times, in certain contexts, it becomes the lens through which I see the world. It may also be the straight-jacket that limits my movement and understanding. Often it can provide the spark of creativity. But no more or less so than my mixed cultural background, the experience of a dysfunctional family life, my supposed high IQ and musical gifts, the happenstance of growing up in the UK/Europe. I am a mother, a sister, a wife, a friend, a student, a writer. And each of those labels still only describe me in part. I am the sum of all my parts, not ‘an autistic person’.

I know others will feel differently, but I, my children and my siblings would not describe themselves as ‘autistic’. And it is the words we each chose to call ourselves that matter, not the ones imposed or dictated by others that matter.

Which is fine, and should be respected. I strongly believe that people shouldn’t be told how to describe themselves. When describing others, however, that’s different.

You are in the minority, and the majority of autistic people feel differently. I personally have a perspective on my AuDHD that is different from yours and ‘has autism’ is offensive to me (and others). The default position of most disability organisations I’m involved with is identity first (disabled people rather than people with disabilities) unless specifically asked to refer to someone using person first language.

For me, there isn’t a part of me that can be separated from my AuDHD and I am autistic just as I am a woman (not a person with femaleness), a mother (not a person with motherhood) etc etc.

I'm coming late to this thread, which by coincidence came up on a search - so not as late as I might be! Just wanted to say hi to some familiar faces and also thank everyone for flagging up the connection between eating issues, gender issues and autism. As some will know, I have a son who's transitioned but I also have a son with eaing problems, so thank you @CautiousLurker for the info about ARFID, which may apply to him.

I'll be working my way through the links but really interesting to consider hormones/puberty as the incendiary device that kickstarts many of these problems. When seeking an autism diagnosis, you put a lot of energy into finding examples of difficulties from early years, as those will be wanted by the diagnosing clinician, but the truth is there's a certain amount of reverse engineering as it's often only at puberty that what was originally a sub-diagnostic handful of traits coalesces into an unmistakeable disability.

Interestingly, I was diagnosed around menopause even though I didn't have a difficult menopause, rather the reverse. But that inability to fake it anymore as an oestrogen-depleted grumpy old woman has a major knock-on effect for anyone who, like me, has been masking++ for years, and for me it's triggered the mother of all autistic burnouts from which I'm only just emerging after several years.

There is way too little research on any of this, still less on the crossing points, as you say @RedToothBrush.

Sorry i know your post is from a few weeks ago but I've only just seen this thread and it really struck a chord with me.
Me and my daughter both have autism, I was diagnosed as an adult after many years of very poor mental health, my daughter was diagnosed in her late teens although signs were there from childhood but she was resistant to a diagnosis at that point.
I have long suspected there is a direct link between hormones and female autism for me anyway (I struggle to see the link in my daughter because she has anorexia and does not have periods unfortunately so it is harder to track)
In the 2 weeks leading up to my period the sensitivities that I suffer with due to autism around sensory issues become 100x worse and I suffer from PMDD.
I was completely drug resistant until I was prescribed pregabalin and I think it 'dulled' my overactive emotional system down enough for me to be able to function(sorry I'm not using correct wording in this post as I am in perimenopause and suffering from poor executive function which I will come on to!).

As I mentioned my daughter is autistic and anorexic and also have gluten intolerance which has been evident from a very young age- tests from coeliac disease came back negative but her symptoms are severe.
I have a dairy allergy.
Sorry I keep forgetting the point I'm trying to make but as I said I am having perimenopause symptoms not with severe memory loss and joint pain along with some other symptoms and I am terrified of trying hrt because of the fact it will be playing around with my hormones and may make my autism worse. I suspect progesterone intolerance plays a huge part in autism in women? Anyone else have experience of this?

Also emetophobia. My dd has had this since age 8/9 and was diagnosed AS at 17.

She is getting better now . However I wish we knew earlier as she crashed out of sixth form in burn out for a year.

Since leaving school she is finding her way and doing well.

Also to add. Since being put on a good fit birth control has helped her hugely.

She definitely has pmdd

She now takes sertraline a small dose and microgynon birth control which is a high oestrogen vs progesterone pill and it's a good fit. No up and downs. No emense pain, fatigue, days lost in bed once a month. It's been a game changer for her and I prey she is able to stay on it for many years.

I have also just found the thread. Thank you @WarriorN .

I went to the website and found an episode from earlier this year some people might like https://www.bbc.co.uk/sounds/play/m001wq87

HebeaverShebeaver
Interesting as I've had emetophobia all my life.
An eating disorder, social anxiety disorder.
At 58 I'm v close to my ADHD assessment and or ASD.

I relate to some of this. We are all very intolerant to cow's milk - I can handle it up to a certain point (cheese and yoghurt OK, and the occasional bowl of cereal) but if I had it every day I'd have a perpetually upset stomach. I have oat milk now. Two of the kids had to have goat's milk as children.

And yes, very intolerant to synthetic hormones. I became very mentally unwell (extreme paranoia and suicidal) when I took norethisterone for a couple of weeks to delay my period while travelling, and had an extreme physical reaction to Vagirux, which is supposed to be non-systemic HRT. I never coped well with the pill either, especially POP (all I could take because of other medical history) with both physical and mental symptoms. I've been lucky with menopause but would only have considered natural measures, not systemic HRT. I've also had depressive reactions to a range of other drugs (for physical problems). My GP thinks I'm bonkers but you can only go through this stuff so many times.

Interesting you react well to pregabalin. I had to take gabapentin for an extended time for neuropathic pain and thought it was a wonder drug, not just for the pain but because it seemed to smooth out ADHD type symptoms. I hadn't considered that I had ADHD previously (my diagnosis is autism) but after that I wonder if I have both. I was in a state of extreme autistic burnout at the time though, so it's hard to be sure. There isn't much of a knowledge base to draw on.

Sorry if this has gone OT a bit.

There's quite a lot out there on hormone impact on neurodiverse women. www.additudemag.com/pmdd-autism-adhd/

Worth a read.

This is an interesting thread, thanks for sharing. Got my attention as a 40 year old recently diagnosed with ASD. Emetephobic, extreme over-eater, anxiety disorder, allergies including fragrance, skin, dust, pollen, all getting worse every year. Had a miserable summer where I had to avoid going outdoors at all because my eyelids were itchy and swollen. I thought it was over but a trip to a farm triggered a familiar restricted throat to something in the air and 2 days later... the eyelid horror. There is so much constantly wrong with me that it's a running joke with DH who is always looking after me for some ailment or other. I had perinatal depression, though not post (perhaps the several hours long panic attack during birth was enough for that experience).

I sought an ASD diagnosis to try to understand myself. Maybe I should be looking at my hormones?!

This really resonates with me

Fascinated to have found this thread.

45yo with history of ED in my teens and 20s, replaced with OCD and emetophobia in my 30s. Diagnosed with hypothyroid, PCOS, worsening Hayfever/animal allergies. Just been diagnosed with ARFID with very few safe foods.

My son has ASD and I’ve often wondered if I am autistic, and during the diagnosis of ARFID they asked if I thought I was autistic. I haven’t ever sought diagnosis (and still don’t think I will) but fascinated by the links of all of these things. And particularly the part about perimenopause.

Thanks for all the links posted here, lots of really interesting articles to read.