Help understanding autism

[Candice34]

I'm looking for help understanding autism as it's causing issues in my family. The girl in question is 14 and has been assessed for autism several times but not officially diagnosed. I know it's hard to get an official diagnosis at times.

What I'm trying to find out is, if you are autistic, do you know you are being autistic?

In my head, I would have thought your brain is telling you to do this and you think it's a normal behaviour to do. For example she made a big thing at a family meal because one piece of food touched another piece of food on her plate and she couldn't eat the food because it was contaminated. However she told everyone that she'd read something about autism and food not touching so now she has to behave like that because she is autistic. This is what I don't understand as if she knows she is doing it, surely we can support her and help her understand that it is ok if food touches etc.

Other instances have included us all ready and waiting to go out, but we all had to wait for about 15 minutes as she was watching something on Netflix and because she is autistic, she can't stop a video until the end as it would upset her balance. They didn't attend another family day out at very short notice as she decided she decided seeing her family was too overwhelming and she needed time to "rebalance her equilibrium". Another one was paid for museum exhibition to celebrate another family members birthday, but she decided on arrival that she didn't want to do it because she's autistic and couldn't cope with it. She wanted to sit in a coffee shop and watch Netflix so her and her mother went and did that while the rest of us did the exhibition the birthday boy wanted to do.

None of us know how to handle her autism and her parents say we just have to do as she says and follow her lead. Callous as it sounds, family members are getting irritated at everything revolving around her and her wishes and we all have to jump to her tune. I feel stuck in the middle as some want to plan things without her and I feel bad for leaving her out but at the same time, others are getting upset at her turning up and everything having to change because it's affecting her autism.

What is the best way of handling her autism? How do you do it to keep everyone happy in family situations like this?

You seem to have the attitude that she's faking it somehow.

Unfortunately, she's probably highly anxious and from that comes a need to control things.

When you say she’s been assessed for autism several times but has had a diagnosis, who did the assessments? Is there any reason why she has had so many? Do her parents think the assessments were wrong?

With girls it’s often a lot more complex because there is a lot to suggest they mask a lot more.

If as a family you really want to help her talk to her, find out what will make it easier for her to attend things with everyone. Make it clear you love spending time with her but want to make sure she is relaxed.

As a parent of a “high functioning ASD” DD, aged 15 - we are currently on the assesement pathway.

Pick you battles - if she wanted to sit in the museum coffee shop, so what - I would gave given my daughter £5 for a drink, and told her to come and find the rest of us when she was ready.

If you are going out .. give plenty of notice of what time they need to be ready - plus, I always give a time if 20 minutes before we actually need to leave, that way we will get out on time.

If she thinks the food is contaminated, so what, get an empty plate a direct her to fill it however she feels most comfortable.

You don’t have to “dance to her tune”, she has something that’s wired differently in her brain, you both need to learn how to manage that, so she can better interact with the outside world.

I learned something the other day, whilst watching Chris Packham, he was talking about his own experiences of ASD, as a teenager - he was addressing other teenagers in the same position and said “it does get better, as you get older you can start to control more things around you” .. so part of what I am doing now is letting go of some of that parental control and letting her be in control of some things - it’s working wonders.

Before ASD was mentioned to us, it felt like we had a rude, demanding, sulky, bad tempered teenager - what she actually was was highly anxious and struggling to cope. She ended up having a breakdown and quite a severe depression last year - it was the support we got from that, that talked about ASD … and it has all been uphill since then.

For example she made a big thing at a family meal because one piece of food touched another piece of food on her plate and she couldn't eat the food because it was contaminated. However she told everyone that she'd read something about autism and food not touching so now she has to behave like that because she is autistic.

we all had to wait for about 15 minutes as she was watching something on Netflix and because she is autistic, she can't stop a video until the end as it would upset her balance

Both of these examples - when written as you have - seem cold and calculated rather than being genuine reactions, as though she is faking her autism. Is that what you are thinking?

@Warmduscher

She's referred by her GP, assessed and referred back as not autistic. The parents think the diagnosis is wrong and that she definitely has autism so she goes back to the GP and gets referred back again.

@Sirzy I've been trying to do that. They were coming here for an evening meal, so I rang her in the morning for a chat and asked what she would like us to eat. She said steak pie, so I made a steak pie. When I was dishing it up, she decided she didn't want pie and wanted soup. I did have a couple of tins of broth in the cupboard but it had lumps of veg in and she only wanted smooth soup. I offered to put it in the blender for her, but she couldn't have it as the lumps of veg had already contaminated it. I ended up keeping everyone else's food warm and walking round to the corner shop and bought her a tin of tomato soup as that was the only soup they had without lumps in. She complained it wasn't carrot soup but then did eat the tomato soup but she was unhappy while she was here. If she'd said she wanted carrot soup earlier, I'd have sorted that out for her.

It's frustrating as I tried so hard to get it right for her but I didn't and I upset her.

I have comparatively little experience compared with families living with autistic children having only taught quite a few (and as they say, everyone's experience of autism is different but with common trends) and there is definitely capacity to say 'oh, you can't ask me to do it like that, I'm autistic' but often with a wry smile or similar. So it's not unusual for a ND teenager to be self-aware enough to make reference to their autism in relation to tasks where they feel safe to do so.

However I would say if she's been assessed properly several times by different people and not been diagnosed I'm surprised they are saying 'she is autistic' still. Having said that almost every autistic girl I've worked with would present like a teenager with anxiety to most people so again it's not impossible she has autism, just the more people see and don't diagnose her, the less likely it becomes that she is actually has autism if you see what I mean?

@Warmduscher

When you say she’s been assessed for autism several times but has had a diagnosis, who did the assessments? Is there any reason why she has had so many? Do her parents think the assessments were wrong?

That strikes me as diagnosis shopping, ie keep going to different doctors / specialists / etc until you get the diagnosis you want.

If the person in question has been assessed several times for autism and they have not been diagnosed with autism, chances are that they don't have autism.

OP, please stop referring to the person as having autism. They have not been diagnosed with autism despite at least two assessments. I don't know what the girl's issues are but she doesn't have autism unless proven so.

On the food thing that seems odd but again based on my very limited experience- when I worked in a special school we showed the kids the menu for the week on a Monday and then in the morning for each day as well and woe betide if it changed for some reason without warning, even in some cases if the student had no plans to eat the item that had been changed! So that seems odd. And it seems odd that she wasn't specific about soup flavour/texture when she first asked for it, if she felt comfortable enough to say she wanted soup? Again though I must caveat that by saying most of my experience is with boys with autism, I can't remember the girls being quite as food-motivated as the boys but I can't remember them being that much different at lunchtime either.

It’s not a case of her recognising that’s she’s ‘being autistic’ about something so that she can stop it. Autism isn’t something you can separate out from the person, as though it’s a layer on top of who they really are. It’s totally fundamental to their identity, an inextricable aspect of their personhood.

There’s a really good Instagram account I would recommend called @ the.autisticats - it is run by autistic people it has really helped me have a better understanding of what it’s like to be autistic.

It can be hard for girls to get a diagnosis. She might end up having to wait until adulthood for a diagnosis at this point. You need to let go of the idea that there is anything you can do to predict her autism or ‘help’ it. She is who she is and her reactions are what they are. It’s not your fault she didn’t want your food, in a couple of years you can give her a few quid and send her to the corner shop to buy the exact meal she wants without you worrying you’ll get it wrong.

It’s quite a normal reaction for an autistic person to read about how other autistic people display and mimic it. They know they’re autistic so think they should be acting like that. Also you pie might not have been the exact look or size that she was thinking about, maybe she was expecting something on its own, something frozen, a specific brand. Only she can tell you really, but she might not have felt able to.

I can guarantee it’s more frustrating for her to live in her own brain than for you who only has to deal with it for a few hours at a time.

That's complicated because in your 08:34 post you have an example of a teen who's a little bit spoilt. An autistic teen will be doing some of the things they do because they are autistic, but autistic isn't the sum of all they are. In fact they are a teen with autism - a complex human impacted by their environment (people around them and how they react, parents' responses, what's going on in the moment etc) and hormones/ puberty and personality and also by autism...

Its very difficult to unpick what is autism and what is upbringing and personality and of course puberty. However yes, individuals with autism and the ability to read about autism will often follow the"rules" of being autistic when they first learn what they are - it can be a relief, but parents completely reinforcing that every whim is "the autism" and has to be indulged won't do her any favours - its about finding the right line to follow, and that's challenging.

As a family member who isn't her parent you need to find a way to work around this without inappropriately trying to tell the family how to handle the teenager. You don't have to be ruled by her whims but it is not your place to tell her or her parents how to handle situations she might find overwhelming. Generally though she should have space to remove herself safely from overwhelming situations - nobody should demand she joins in - without the extended family having to change their plans.

I agree with the comment about ND teens sometimes using a diagnosis to excuse normal teen behaviour - I just call it out, and she does normally laugh.

Can you tell us more about the diagnosis process she has been through. Our GP doesn’t “refer for assessments”, it’s all done via school, and a specialist multi-disciplinary team - we came in from CAMHS via school.

This reminds me of someone I know. She is autistic however she also has parents who IMHO handled it badly. They limited everything telling her she couldn't do things because of her autism. Her adult life is sad. She has never had a job, she doesn't do much.

I know lots of young people with autism and several family members. I think it's entirely possible that your family member has it but the strangeness or frustration you have is down to perhaps her parents not handling it as best they could? Sounds stressful all round.

There are aspects of her behaviours that tally with my own, so certainly seem to me like the sorts of things that an autistic person might do, but there are others that put me more in mind of the likes of Szasz's idea of Mallingerer, and the fact that some people do suddenly insist that they have developed symptoms only once they themselves become aware that some other people with a diagnosis experience said symptoms.

It could just be as simple as the fact that all autistic people are different, so you are going to see a variance in exactly what they do and exactly what they experience.

The Chris Packham comments about it becoming easier as you get older resonate with me, to an extent, but for me it's not a straightforward linear correlation between increased age and increased peace. My autistic foibles and behaviour got steadily more pronounced and more problematic until I was in my mid-30's, at least, and then I started to feel like I had more control from then on.

I think you have a horrible attitude - and no, you cannot necessarily teach someone with a neurodisability issue to be ok with things like food touching, you would just be teaching them to mask their reactions to make you more comfortable.

Girls are classically under diagnosed for ASD, so it is believable to me, as someone who works in the field, that she may have to fight for a diagnosis. That is not at all uncommon.

I suppose my question would be, if this girl is "faking it" as you seem to think, then why is she not finding the social rewards that motivate the rest of the family to be motivating enough to do what everyone else is doing?

She might be autistic, but to me it sounds like she's jumped on the Autism bandwagon, is milking it for all it's worth and her parents are enabling it. If this is the case she's going to be awful when she's an adult.

I'd be tempted to stop jumping to her tune. She doesn't want pie? Give her toast. Let her parents spoil her if they want but I wouldn't go along with it.

I await flaming.

The thing I do find odd about her, is that she's able to articulate exactly what she is finding problematic. Now that's not at all unheard of, autistic people are not necessarily deficient in any way, but personally, at that age, being unaware of my autism, I knew when things freaked my out, but I was completely unable to articulate WHY they were freaking me out, especially since they appeared to be totally normal and acceptable for other people.

The fact she is so 'on the ball' with it all makes me wonder if she is just enacting an expected behaviour.

I suppose my question would be, if this girl is "faking it" as you seem to think, then why is she not finding the social rewards that motivate the rest of the family to be motivating enough to do what everyone else is doing?

Because she gets attention, and adults putting themselves out to appease her.

If autism had been on my sister's radar as a teen I can imagine her acting like this. She was immensely jealous of me being born when she was 10 and never got over it. Acting like this girl would have got everyone's attention back on her. As it was she turned to bullying and throwing tantrums to get her own way. Still at it at 50.

Similar to other posters I think the tone of your message comes across that you feel she's behaving in a calculated way. I don't know the girl in question so I've no idea if this is correct or if you're letting other things cloud your judgment.

I do think it's worth remembering that girls tend to be incredibly good at masking so they take much longer (if ever) to get diagnosed. Often they get to the point where the pressure of masking just spills out in a horrific way - a breakdown or self-harming. It might also be worth remembering she may not be able to articulate why she doesn't want her food touching or to go in the museum or whatever so it's just easier to say 'it's because I'm autistic' when people ask.

@ExtraOnions

As a parent of a “high functioning ASD” DD, aged 15 - we are currently on the assesement pathway.

Pick you battles - if she wanted to sit in the museum coffee shop, so what - I would gave given my daughter £5 for a drink, and told her to come and find the rest of us when she was ready.

If you are going out .. give plenty of notice of what time they need to be ready - plus, I always give a time if 20 minutes before we actually need to leave, that way we will get out on time.

If she thinks the food is contaminated, so what, get an empty plate a direct her to fill it however she feels most comfortable.

You don’t have to “dance to her tune”, she has something that’s wired differently in her brain, you both need to learn how to manage that, so she can better interact with the outside world.

I learned something the other day, whilst watching Chris Packham, he was talking about his own experiences of ASD, as a teenager - he was addressing other teenagers in the same position and said “it does get better, as you get older you can start to control more things around you” .. so part of what I am doing now is letting go of some of that parental control and letting her be in control of some things - it’s working wonders.

Before ASD was mentioned to us, it felt like we had a rude, demanding, sulky, bad tempered teenager - what she actually was was highly anxious and struggling to cope. She ended up having a breakdown and quite a severe depression last year - it was the support we got from that, that talked about ASD … and it has all been uphill since then.

I'm also a parent to two autistic people. One stroppy teenager and one adult.

This is exactly right. High anxiety and lack of control over things can make their anxiety appear as stroppy behaviour.

@TimeIhadaNameChange

She might be autistic, but to me it sounds like she's jumped on the Autism bandwagon, is milking it for all it's worth and her parents are enabling it. If this is the case she's going to be awful when she's an adult.

I'd be tempted to stop jumping to her tune. She doesn't want pie? Give her toast. Let her parents spoil her if they want but I wouldn't go along with it.

I await flaming.

Agree with this 100%.

Not sure what type of assessments she’s had but if she’s had a proper/formal assessment that says she isn’t autistic then she most likely isn’t autistic.

It can take up to three and a half years and multiple assessments before a conclusive diagnosis is made and - to be honest about it - the assessment process is not smooth, there is a lot of gatekeeping of services involved, and ots very much a lottery for whether you get a good team or a bad one. One of my DC had three assessments, the first two concluded that there were traits present but not enough to reach a formal diagnosis, the third assessment diagnosed them and also noted that there had been more than enough information to make this diagnosis the previous two times so there had been no need for the process to have been dragged out so much. They ended up raising a complaint on my behalf about it. DC was autistic the entire time we were waiting for the diagnosis, the autism didn't suddenly exist when the letter arrived, it was there all along.

It can be rough being a teen, even rougher if you know you're different from your peers, so as well as going through the typical teen stuff she'll also be adjusting to being neurodivergent and reconciling that as being part of who she is. It's the "who am I?" stage of being a teenage multiplied by a hundred.

Her parents are following her lead, the wider family need to follow their lead. If she wants to sit in the coffee shop on a day out, so what? Its not like she's demanding all of you sit with her, let her go and arrange to meet up at the end. If they decide not to come along to a family event at the last minute then again, so what? The rest of you can still go and you can meet them another time.