Published on 12, July, 2020
I am so thankful I found this Web site. I have learnt a lot in the last 2 hours!
My daughter is nearly 17. She had / has anorexia and was not responding to the usual therapy. An experienced nurse wondered about ASD and arranged an assessment which to my surprise gave an autism diagnosis.
Since then my daughter seems to have totally changed. All of a sudden she now says she has sensory issues with food textures, this is the same girl who age 10 was enjoying everything from sushi to snails and steak. She is now saying she can't eat with us as she needs total silence in the kitchen, although she had been eating in busy noisy restaurants before. She now says she can't focus on school work and need decompression time. She studied so well for her National 5's (scottish gcse) She now says she can't speak on the phone, the list goes on.
I am so confused, how can getting a diagnosis change her so much? Has she always had these issues but now the diagnosis has given her permission to reveal them?
Thanks, I had been thinking she may be using her diagnosis to avoid eating. Thanks for taking time to comment.
Well that does sound horrendously confusing for you. I wonder which is the true underlying driver for your daughters current food & easting issues - the ASD or the anorexia. I would image that they are inextricably linked - thus compounding your confusion!
NAS83261 said:how can getting a diagnosis change her so much?
This I can help you with however, in relation to me and my journey. Becoming self-aware of autism has resulted in some very profound changes in my behaviour - and there is no teen-angst complicating my 50+ year old brain.
Personally (although others here may disagree) I think that when the person concerned becomes self aware of their autism in how they think and how they behave, that self awareness can change certain aspects of that persons life quite profoundly......and in my case, virtually over night.
I do wish you and your daughter well. Goof luck.
It's possible that seven years ago she didn't mind those foid so much, but now a lot of things have changed for her because of her anorexia. Mental health can affect appetite and tastes do change over time. Things are also very difficult at that age, and the added stress of exams and the world on the last few years could have built up to a burn out where everything has become much more sensitive. It's like how light and noise seem worse when you have a hangover.
The diagnosis has given her permission to stop pretending. She’s now able to tell you what she does and doesn’t like. No doubt her eating problems were due to texture, taste and smell sensory issues. Or she could have ARFID and not be anorexic at all. I think I read that a large percentage of girls are diagnosed with anorexia, when in fact they are autistic, but that’s another post… Also, controlling her eating might have been something she needed to do to cope with all internal frustration she was dealing with.
My daughter are everything as a child. I can’t remember when things changed, but probably around age 13. I did know she was autistic at 11, but no one would listen to my concerns. I used t9 be confused as to why she now didn’t want to eat toast, or lumpy stew, red peppers….! And as time went on, if she did stay at a friends, and had cereal for breakfast, I would roll my eyes, because she wouldn’t touch it at home lol. And all this time, I didn’t even know I was autistic myself!
I remember my son say I was more autistic since my diagnosis this year. I don’t think I’m more autistic, I’m just unmasking.
It is possible that it is the anorexia that is uppermost in your daughter's reaction to her autism diagnosis, at least for some of the traits she is describing. Autistic traits about food texture are a useful method for avoiding eating, especially eating higher calorie foods. Insistence on eating alone allows greater scope for the avoidance of eating. Using noise-cancelling headphones is the obvious remedy for misophonia related to eating sounds, or the use of earphones and music, so eating alone is not necessary, even if it is a genuine sensory problem. Lack of focus is more an ADHD problem than an autism problem - hyper-focus is more usual. Problems with using telephones are a more common autism difficulty. I think that you have a mix of genuine autism-related problems and the use of autism as a pretext for avoiding eating and having her lack of eating being noticed. I am not a psychiatrist, however.
I have witnessed this is a few people, but I suspect it is caused by years and years of heavy masking. Masking is basically suppressing the issues than exist, it may be that the diagnosis has made her stop masking, or she may be experiencing burnout or something like that. For some people they spend most their life disassociating from sensory issues, and when they learn about them, it sort of destroys the coping mechanisms they’ve built up. I was diagnosed at age 19, almost 20, but I had been failing education for a while prior. Keep in mind, I was considered as a gifted child, but it’s true that the higher education system just isn’t set up to deal with autistic people. I have failed as many years of higher education as I have passed. Autism is a disability, that’s been something difficult to come to terms with myself.
As for advice? In terms of eating, there could be some kind of ARFID going on, which is common in autism. For school, she should probably get a pupil support worker to help her stay on track. This is essential because it’s unlikely she’ll earn a degree without support. Only 40% of autistic people in university end up graduating with a degree.