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?

@Peanutsandchilli

I'll be honest, it doesn't sound like autistic behaviour. It sounds like attention seeking for another reason, possibly some anxiety too. The fact that she's been assessed for autism, and told she's not, only backs up my thoughts. Teenagers will push boundaries, and it sounds like that's exactly what she's doing.

I totally agree.

@OaxacaChihuahua

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.

What a lovely, helpful post! Thank you.

At one point i found something that i think was called, 'asd simulation,' online. That might help.

I suspect that if she's had multiple autism assessments and the results say she doesn't have autism then she doesn't have autism.

Yes it is very difficult for females to get diagnosed, but that is because it's difficult to get referred in the first place. I know several females who struggled to get assessed but I don't know any who didn't get a diagnosis once they did get assessed.

My own DD was assessed as a teen (having had all her symptoms dismissed as down to poor parenting for many years). The assessment she went through took months and was way more in depth than when I subsequently went through it and then 4 year old DS. The psychologist explained that it's actually harder to diagnose in teens because there is so much more learned behaviour and attention seeking behaviour and finding ones identity at play.

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

I'm autistic. I'm never 'being' autistic, because I am autistic. I don't keep my autism in a bag and pull it out sometimes - it's who I am. I may recognise a behaviour as happening because I am autistic, but I not 'being' it. It's not something you pick and choose.

That said, I don't think it bears much relevance here, I just wanted to say my piece because I hate the misunderstanding:

I found the asessment process very in depth and went on for a couple of years from start to finish. If she has had that (did you say twice?!) and they say she isn't autistic, then she isn't autistic.

Have you had sight of her records? Unless you have have you don't know. One of my DC was assessed three times before being diagnosed and the final assessment concluded they should have been diagnosed the first time around and certainly the second time around as there was more than enough evidence there to support a diagnosis. The team who did that final assessment raised a complaint about it.

She ain’t autistic, OP

Yet another poster who has had sight of this girl's medical record...

Soup gate

What a nightmare. If she has autism which she may well have then you need to make adjustments for her if you can and you did.

Food is perhaps a difficulty for her that does not make you a magician.

She or her parents need a fallback for such situations. The responsibility beyond what you already did really is theirs.

The clinical psychologist and pediatrician who assessed DS at age (just) 3 told us they knew within 5 minutes of him entering the room. He’s an extreme case, but I’d say a missed diagnosis was the exception rather than the rule - particularly as it’s something like 1/100 kids now on the spectrum. It’s safe to assume the diagnosis was correct.

That's my experience too. Me, DD and DS were all identified as autistic almost immediately. We went through the assessment processes to confirm what the experts already knew.

Same, I have two autistic DC and autistic siblings as well as autistic nieces and nephews. I still don't feel qualified to make firm statements about whether or not someone I haven't met/whose record I haven't viewed is or isn't autistic

@Punxsutawney

Seems to be some posters on this thread suggesting parents of autistic teens can 'handle it badly' or 'reinforce every whim'.

Unless you are actually living it, it's not really fair to suggest it's a parental thing. Many autistic teenagers have really complex difficulties that can impact hugely on their lives, often there is little to zero support for them or their families. Ds who is autistic has been on the CAMHS caseload for a year and had yet to access any therapy. Parent blaming does not help.

And autistic bandwagon..... seriously?

At 17 Ds wishes he had never been born and feels like life is hopeless, some days I wonder if he will ever be able to live a functional life. Autism is not fun or quirky in our house....currently it's shit. I'm not sure anyone would want to fake this life.

I'm not saying it's easy but yes I'm sure some parents do handle it badly. Just as some parents of NT children don't get things right. And I'm in the first category and learning as I go too.

The example I made earlier is an observation of someone I know well who has been limited by her parents in her upbringing which is sad. Not all parents are kind loving and supportive sadly.

In the op's case, I wonder where the parents are at if they're allowing the op to go down the shops rather than perhaps bring something they know the child will eat or deal with it themselves. Doesn't seem like they're coping too well?

@Clocktopus

Same, I have two autistic DC and autistic siblings as well as autistic nieces and nephews. I still don't feel qualified to make firm statements about whether or not someone I haven't met/whose record I haven't viewed is or isn't autistic

That's a great attitude. As someone with autism (yes; diagnosed and everything) I appreciate your sensitivity around the issue.

I've a 16 year old DD who is autistic. I also work with many autistic children who have a diagnosis and some who have traits but don't have a diagnosis.

Getting a diagnosis is really dependent on whether the person diagnosing is up to date on their training, especially with regards to girls. When DD was diagnosed it was through CAMHS with two psychologists who knew that the normal assessment procedure with boys misses out diagnosing girls because they present so differently. They diagnosed DD just by talking to her and carefully listening to her responses. Her school would describe her as quirky, but she mostly masks there so there were no huge concerns but with the changes in school due to the pandemic her anxiety rocketed.

I know my DD sometimes sounds like she has swallowed a comprehensive book on ASC because she is trying to understand herself and her place in the world. It's also a sign of her special interest and need to know EVERYTHING about a particular subject. She also goes through phases over food (so I ask her to find recipes she is interested in and then cook it, with my support if needed), but there are times I will talk it through if I think she's just being a bloody minded teen!

@Candice34 if nothing else take a look at Limpsfield Grange School as it has links and advice on there about autism and girls limpsfieldgrange.co.uk
Also the National Autistic Society www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

I think FluffyDog has it spot on - unfortunately lots of the assessment criteria for ASD were based on how boys classical present and it is a more recent development that we give proper consideration to the ways girls with ASD present. So my faith in the previous assessments would really depend on the experience of the practitioners involved. I think it is naive to discount the possibility of errors, or of issues of gatekeeping services impacting the decisions made.

Things like the dc saying she doesn't have food touch because that is what autistic people do could be a way of expressing she previously felt strong pressure to mask an impulse about food and is trying to find a way to express her feelings and needs.

Again the issue with the steak pie is difficult - it may be that the food presented is not what she had imagined when agreeing to eat it - e.g. the filling is wetter than she imagined and has soaked into the pastry in a way she can't tolerate. I know things like that are frustrating, but they aren't always the picky or unreasonable behaviour they first seem if you understand the difficulties the dc is having.

I dislike phrases like "jumping on the autism bandwagon". Life is hard for children with ASD and I don't believe most people would choose to have this difficulty. I do think that historically a large number of dc masked their difficulties for the convenience of their parents and teachers. It is a good thing where people feel they can be themselves.

We accept 'masking' is a common asd trait, especially in girls. They copy others to fit in to what they think is expected of them. Why then is it hard to believe, once they learn about autism and what common traits are, they might then act as they think they they are expected to in this case as well?!

Of course @Stompythedinosaur example is another possibility- she was masking before and now feels it's ok to show as people know about the (suspected) autism. Either are legitimate possibilities.

How does she get on in school?

@NotPersephone

Yet another poster who has had sight of this girl's medical record...

Nope, just very familiar with actual, proper, diagnosable, life-ruining autism and the typical attention-seeking antics of daft teenage girls (and boys).

This is really rude, and a complete misunderstanding of the complexities of the diagnostic spectrum.

Your son was aged 3 and clear difficulties in the diagnostic areas for ASD, there are plenty of other children and adults, especially women who's diagnosis isn't as clear cut but is every bit as important.

You do a disservice to everyone who wants to learn about autism by calling traits "attention seeking".

"He doesn’t have a meltdown and later explain it’s because of his neurotype - he behaves 24/7 in a way that is consistent with that neurotype."

My son is autistic and aged 9. He's perfectly able to talk about his behaviours afterwards. In fact we encourage it, to help him understand about his ASD and what is in and out of his control.

I have autism and professional expertise in the area of ASC and am happy to answer sensible questions about autism, distinguishing between my experience of autism and what is known about the condition.