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?

I hadn't heard the phrase 'Autism bandwagon' before but it does sometimes seem apt.

It sounds to me that she’s not autistic and is using a self-diagnosis to behave like a spoilt brat and her parents are indulging her in this.

Anyone chuntering on about bandwagons and faking autism has very little understanding of what it's like to be autistic or to be the parent of an autistic person. No one is faking autism for shits and giggles, the assessment process is difficult to navigate and it does miss a lot of cases that should have been diagnosed largely due to the gatekeeping involved and the assumption that issues are entirely down to parenting - there are a lot of cases of parents of autistic children being accused of FII when pursuing an assessment.

Look at some of the things posted on this thread about autism. Do you think anyone aspires to having that level of judgement directed at them? Of that this scrutiny and suspicion of faking it is somehow a desirable lifestyle?

I've worked with autistic people for over 20 years and one thing I've learned is there's no two people the same. Some will present more traits than others, some will be fantastic at masking them but struggling inside. Girls are notoriously more difficult to diagnose, before you write her off wait for the outcome of her assessment.

It is true that it is very hard to get a diagnosis for ASD for girls.
She may/ may not be clinically ASD whether she has Dx or not.

But, in way, that's beside the point. The thing is, how life IS for her, and how those around her help her to achieve all she can (like anyone).

My Dd just turned 14. We went on our 4 day family hols.
She was interested in only 1 activity so did not really join in the rest (she hung around with us though) When the day came for her chosen activity, she was too tired to enjoy it. She froze at the entry to a London 'event' and could not articulate why, or what would help.
I explained to the event manager that 'she was Autistic' as it was easier than trying to explain the anxiety, sensory issues, lack of comms, social interaction problems, etc etc etc.
We eventually got her in (which she said she wanted, still) but it took over an hour. We were there 4 hours and they had to ask us to leave as she was enjoying it so much. It can be frustrating. But I try to remember that it is way more frustrating for HER than me.

I guess the thing to do, if you suspect she is 'faking it' (which it seems you might) is to dial down any 'fuss'. If she doesn't want the pie give her the option to make herself toast. Let her sit stuff out (but don't fuss / arrange any special alternative). Be kind just be really low key about it. I know when my Dd can't join in she HATES fuss so even if she is ASD then that might be the way to approach it?

Also I'd add to all the people commenting, you are only getting one side of this story, unless you are witnessing the event's firsthand it's difficult to pass judgment and there's no one that can diagnose a stranger from the comfort of their own home.

It's not unusual for autistic people to speak in the third person. So rather than saying "I do this because I am autistic", we might say "this is what autistic people do".

People are autistic before they get a formal diagnosis, it's not something you develop at a later age. Misdiagnosis is also common in females, they're often diagnosed with bipolar, borderline personality disorder, anxiety etc before receiving the correct diagnosis. It's not possible to know if this applies to your relative or not, as we don't have her medical history, and we are not mental health professionals (and many of them often miss it too).

my post isn't clear if MY Dd has an NHS Dx of ASD: she does.
In a way, that's not the point. It's the daily managing of the traits, for her.

@ExtraOnions

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.

In our part of the world it was GP via the paediatric team for one child and school nurse via the Paediatric team for my other one. CAMHS don't diagnosis at all in our area.

There doesn't seem to be a universal pathway in this country.

[quote Candice34]@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.[/quote]
I have a kid with autism and there's no way I would have pandered to that.

I can feel your frustration.
I am learning about autism too, my DD 14 has recently been diagnosed privately as wait for nhs diagnosis is 2 years+ where we live.
We have heard that some NHS trusts are moving away from diagnosis or are making criteria for diagnosis more difficult.
Girls are often diagnosed later and are good at masking, things coming to a head at puberty is very common.
TBF your family member does sound that she has autistic traits ,is highly anxious and needs to control things, all very common with autism.
We struggle to get DD out and any busy,family event is likely to cause her enormous anxiety.
So speaking personalIy I would try and support and be as flexible as possible and dont make a fuss, keep it all low key.
Regarding food I would just say explain I made the pie for her and say this is what we have if you don't want it and let her choose. She might be happy with toast or a bag of crisps.
Try not to take any rejection personally and really important keep trying to engage and keep communication light with minimal expectation and demand.
Since DD has been diagnosed it made me look at family traits in a new light , Ive always thought MIL was a bloody difficult woman, now I am pretty certain she has autism too!

@AlfonsoTheMango
Completely disagree , it can take years and and several high specialised opinions to get the diagnosis of ASC correct . If the person is displaying autistic tendencies , which this young person clearly is, then it's likely that they are autistic, or have autistic traits which is the same thing . Are you a specialist in autism ? Clearly not. Or it could be an associated issue which needs further understanding .

I can't believe some of the blatantly ableist comments on here , it's really disgusting !! Especially the use of the term bandwagon .

Whatever your family member is going through OP, if she is on the spectrum or not, or has mental health issues , or going through something else , it needs understanding , and support , please don't listen to these derogatory comments ! Some autistic people like to have a diagnosis , it's something they can cling to whereas others reject it .
It's a cliche, but we are all on a spectrum . The world is full of neuro divergent people . Not everyone fits into one mould. It sounds like you're really trying to understand her , I would just carry on as you are, you will get there , and probably be the one that has the best relationship with her . With something like the soup issue , I would pre empt that situation with , 'we are having soup today , I have x,y and z but if you don't want those , we can make a sandwich ' . Small choices are a start .

@Candice34
Both my ds and I have autism, I am high functioning ds is much more severely affected.
I am very aware of my limitations when it comes to things that I know will cause me problems and as such I can and avoid these triggers as much as possible. One of my issues is crowds, I absolutely cannot deal with people in my personal space. I have agreed to go places which should have been quiet and found them instead mobbed and have had to pull out at the last minute. I find somewhere quiet and wait on everyone else. I rarely go to large family/friends get togethers for the same reason. Yes when I can put myself out of my comfort zone but it comes at a high emotional cost to me.
My ds is much less able to recognise his triggers as everything causes him issues so for him it's about minimizing how the world impacts on him.
The thing about autism is that no two people are the same and someone can have autistic traits without having autism

She's old enough to know what she wants to eat. I would've said you choose steak pie so that's all on offer.

With or without autism the behaviours described need to be addressed by firm parenting. Kids need rules and boundaries. They also need to feel in control in the teenage years.

If she feels she is living with autism who are we to argue? It doesn't give her the excuse to be rude. I say that as a mother of a dx son with autism. He can be very rude at times and we always remind him of a better way to say something in social situations.

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.

@UntilYourNextHairBrainedScheme

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.

The whole of this message!

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.

My ds is autistic

I wouldn't "pander" this much. For example, since he was 12 or so, if he doesn't want to join us on an outing that's fine, but I wouldn't miss it to sit with him. I would have said to ds that of course he could sit in the cafe while we look at the exhibition. I would have made sure he had his iPad and headphones in a bag somewhere for such an eventuality.
In the steak pie situation, I would have offered the pie, or the available soup, or bread and butter/cheese. You already made the adaptation by discussing what she wanted in advance. You didn't have to run down to the shop to get smooth soup. That crosses the line between being flexible and pandering imo. We know what DS will eat and he gets family meals with minor adjustments. Eg when we have spag bol, he hates Bolognese sauce so he has the same pasta with butter and cheese. If we have rice and meatballs, he has his meatballs not in the tomato sauce. But I am buggered if I am prepping completely different meals for him.

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.

@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.

I agree.

Let her parents sort her out, nobody else has to jump to her tune.
I would have not gone to the shop to cater for her whims.

You don’t like the food you requested? Fine, there’s toast,cereal and beans/tuna on the offer. No? Well sorry,don’t have anything else.
If parents are unhappy then they could sort something out.

It is difficult because all autistic people are different.
My dd has issues like the ones you described but she doesn't talk about being autistic, she would probably have orchestrated a row so she could run off and not eat a dinner where food had touched or do something she felt uncomfortable with rather than tell us what was wrong. She has a need to be in control that is rooted in anxiety and as other posters have said that is getting better the older she gets as she has more control over her life.

With dd she often cannot do things like attend certain events and cannot explain why. She gets very upset about this as it is often things she really wants to do.
It is very complex and hard to unpick, on the surface she may appear difficult but her life is much harder than other teens her age and she really struggles at times.
As others have said the diagnostic process is rigorous but girls do slip through the net as they mask so well.

[quote Candice34]@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.[/quote]
She this is pandering. Autistic or not, I wouldn't do this.
I would have just said, im sorry that is all I have but I completely understand if you cannot eat it. Especially when you cooked what she asked for.
Anyone can be spoiled autistic or not. A full on autistic meltdown is distressing for others to see so I can understand why her parents give in to her but it wont do her any good in the long run. I would have briefed my dd before we came saying it was ok if she couldn't eat her food for any reason, she could just politely say she wasn't hungry or something and she could have supper later. I wouldn't let her disrupt everyone elses meal.

@Runnerduck34

I can feel your frustration. I am learning about autism too, my DD 14 has recently been diagnosed privately as wait for nhs diagnosis is 2 years+ where we live. We have heard that some NHS trusts are moving away from diagnosis or are making criteria for diagnosis more difficult. Girls are often diagnosed later and are good at masking, things coming to a head at puberty is very common. TBF your family member does sound that she has autistic traits ,is highly anxious and needs to control things, all very common with autism. We struggle to get DD out and any busy,family event is likely to cause her enormous anxiety. So speaking personalIy I would try and support and be as flexible as possible and dont make a fuss, keep it all low key. Regarding food I would just say explain I made the pie for her and say this is what we have if you don't want it and let her choose. She might be happy with toast or a bag of crisps. Try not to take any rejection personally and really important keep trying to engage and keep communication light with minimal expectation and demand. Since DD has been diagnosed it made me look at family traits in a new light , Ive always thought MIL was a bloody difficult woman, now I am pretty certain she has autism too!

Yes to looking with new eyes at family members. My grandmother was displaying very autistic traits. I remember the penny dropping and realising that many of the older 'quirky' family members were behaving in quite autistic ways.

They are all 55+ so no possible diagnosis available for them as children.

It's given me a whole set of things I can do to minimise their anxiety. It also makes me less frustrated when trying to make sense of quirky relatives. I can see it clearly now, so clearly it's upsetting they have never been able to access help or compassion.

Three out of my five nieces and nephews are diagnosed.
I think autism runs in families.

You can be anxious and highly strung without being autistic.
From the snapshot of this post I would land on the side of high anxiety/desire for control.
That doesn't devalue the teen's feelings, but in my experience anxiety can be misattributed to ASD. It has overlaps and can be a great mimic.
There could be no malice in the attachment of the 'autism' label, it can be a great relief to individuals/families to have a framework to work with/an explanation and can legitimise the adaptions the teen feels she needs.