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?

@AlfonsoTheMango

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.

Do you know of any resources useful for a parent raising a child with ASD please?

I'm learning more about the importance of getting information on autism from the community so any good spots or books, podcasts etc would be appreciated!

Have you checked the Autism Society's web site, @AntiSocialDistancer? That would be my first port of call.

Sorry - should have said National Autistic Society (www.autism.org.uk/). I'm multi-tasking!

With autism there is multiple things going on. Partly it's just the way they are, partly it's a tendency towards obsessive behaviours (what varies a lot) and there's lots of proven strategies help with this, there's lots of anxiety especially in girls too.

At no point in DD's life (she was diagnosed at 2) have I accepted that changes aren't possible but you as a family learn what reasonable adaptations are best all around eg I choose quieter restaurants, hotels which aren't overrun with children etc as noise is a major trigger for her becoming very uncomfortable and that in turn triggered outbursts. I can't generalise because autism isn't the same in two people, it varies so much, but eating disorders aren't uncommon- never experienced the "not touching" myself but dd has been on drips following periods of just not eating at all, as a young teen her food was almost exclusively beige.

@Candice34

When was it first thought that she might have autism? I know girls can be harder to diagnose but lf she's had several referral for the same thing and they all say she's not autistic maybe she's not . Some of the stuff you have said seems almost classic autism. But yet she's not been diagnosed so its hard to tell if it's a learned behavior or if she does have autism? But can all the professionals she's seen be wrong? Especially if she's gone through the process a few times.

I do agree it's probably harder to diagnose a teenager. My ds was diagnosed a few months before he was 6. I think its probably easier at that age though because they just think they are just playing or having a chat. They don't realise they are having assessments. Where older teenagers do so they probably act differently in some cases .

I have 2 DCs. Both have an ASC.
My DS was dxed at 7 after a conversation with his teacher, a referral to a paed and a DISCO (similar to ADOS). He has what was once known as Asbergers. His behaviour was 'typical' of ASC.
My DD was dxed at 8. It took a lot of fighting to even get a referral and that was rejected because school weren't seeing any issues (because hiding under tables is totally 'normal'). She saw an ed psych privately for another issue and he said "This is not a NT child" within 30 seconds of meeting her. She just not present 'typically'

In my rambling I was trying to say that girls are astoundingly underdiagnosed.

In terms of your young relative - My DS went through a phase of saying he behaved in a certain way because "That's what autistic people do"
I think he felt he had finally found people "like him" and wanted to cement his belonging. We had to do a lot of talking to unpick that one.

My daughter is a dancer. She loves to dance, loves her classes etc but every Friday night, when I go and give her the 20 minutes before you need to get changed warning, she will growl at me. She takes ages to get out of the door and sits in the car with a face like thunder. Yet as soon as the music starts and she dances her first step she's grinning and laughing and emanating joy. I have asked her time and time again if she wants to stop going and the answer is always no. She just hates the change between activities no matter how much warning is given.

Regarding the trip to the museum - I'd have taken mine somewhere safe and quiet. My DD I could leave but my DS would get too anxious at being left. My DD could order herself a drink, my DS couldn't at 14 but could now at 16.
The food thing - foods not touching? I'd have given a new plate and instructions to serve herself.

The incident with the pie? I'd not have gone to the shop to be honest - that was way above accomodating- but I'd have said she asked for the pie, I had this, this or this available. In terms of asking for the pie - maybe what she visualised was different? I once told my step mum that my DD would happily eat chicken. I meant plain chicken. My step mum served it in mayo as a salad. DD wouldn't eat it. My step mum was upset because I'd said DD would eat chicken.

And, as another poster said, my children don't choose when to 'be autistic'. They ARE autistic. Its how their brains are wired.

@AlfonsoTheMango

Have you checked the Autism Society's web site, *@AntiSocialDistancer*? That would be my first port of call.

Thank you!

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

Holy shit, I don't think you have any idea how offensive that is.

Do you know you are being neurotypical?

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

Leave her food alone. As an autistic adult, I still hate food touching or being mixed together. Sensory issues around food are more than just simple fussiness. It's hard to describe the surge of fear when I get presented with food that is not right. Luckily I am an adult so most of the time can control my own food but I developed an eating disorder as a teenager simply because eating caused so much anxiety.

I know that food touching or, even worse, mixed together food (ie things like soups and stews with more than one texture) are safe but that kind of reasoning doesn't take the anxiety away.

. 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

Hard to tell, could be normal teen behaviour or it could be that she made an effort to be there but was overwhelmed with anxiety so sitting in the cafe was the best thing for her. I would expect a 15 year old to be able to do that without mum though.

@Gingerkittykat

I don't think it's overly offensive if it's just a genuine, well-intentioned question from someone who doesn't really understand autism and is seeking to understand a bit better?

There are two types of ignorance, naive ignorance, and wilful ignorance, and I don't believe it's the latter in this case.

I mean, I'm diagnosed and I certainly know when I'm having a meltdown, struggling with a sensory issue, or when it finally dawns on me that the person in front of me really has had enough of my diatribe, so to that end, yes, I'm autistic, and I know when I'm being autistic (sometimes). Probably more apt to put it in terms of I know when my behaviour is out of the ordinary. You learn to spot the signs as you get older.

[quote XDownwiththissortofthingX]@Gingerkittykat

I don't think it's overly offensive if it's just a genuine, well-intentioned question from someone who doesn't really understand autism and is seeking to understand a bit better?

There are two types of ignorance, naive ignorance, and wilful ignorance, and I don't believe it's the latter in this case.

I mean, I'm diagnosed and I certainly know when I'm having a meltdown, struggling with a sensory issue, or when it finally dawns on me that the person in front of me really has had enough of my diatribe, so to that end, yes, I'm autistic, and I know when I'm being autistic (sometimes). Probably more apt to put it in terms of I know when my behaviour is out of the ordinary. You learn to spot the signs as you get older.[/quote]
I'm with @XDownwiththissortofthingX.

I think I understand the question and I don't find it offensive. What I take from it is that the OP is trying to figure out the person's level of self-awareness. For example, there are aspects of life, such as socialising or changing plans at the last minute that I find challenging though I do my best to be accommodating.

OP, I'd suggest the parents have a look at the Lorna Wing Centre, they are expert in diagnosing girls and women with ASD. They should go for the full diagnostic assessment.
www.autism.org.uk/what-we-do/diagnosticservices

It may be they haven't been for full diagnosis, just screening tests which are often much cheaper because very often they are offered by people who are not qualified to diagnose, but who can score tests to spot the possible signs, then recommend a full referral.(exception being Lorna Wing who do both)

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
I can see both sides of that, so will fence-sit.
If she's going to present with any autistic behaviours she reads about, life could be very interesting.

Have a look at the attached the graphic which lists the areas in which autistic people can present very differently.
The full article is here neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

For descriptions of life with autism, lots of people recommend the Girl with the Curly Hair, I like Purple Ella on youtube.

'rebalance her equilibrium' is an unusual phrase for a 14yo to use, sounds like something from a pretentious wellness blog. Most discussions about autism and overwhelm usually say they need time to process events and importantly it can take hours or days. It's not something a few deep breaths will cancel out.

her parents say we just have to do as she says and follow her lead
Oh yeah, like that happens for all autistic teens
No, she is a family member, a single unit among a group of single units and as such you may wish to make some reasonable adjustments for her, like allocating a quiet space for her if the events aren't to her liking when she thought they would be, but you do not need to all bend over backwards and change your whole itinerary throughout the event to accommodate her so far undiagnosed preferences to the detriment of a family occasion.

I'd give her a detailed plan of what the occasion entailed, any food choices, all activities and times and any pre-warning of noise etc. then also have a quiet space nearby like her parents' car that she could retreat to at any time if she felt overwhelmed.
I'd also warn the parents to provide backup food and drink as well as a safe space if she was likely to reject what she had previously chosen for any reason.

If she is neurodiverse, she is, she was born like that and nothing can change it, although her presentation of traits can markedly change (or not) as she matures.

Her parents seem to be hung up on autism but there are many other diagnoses of neurodiversity she could have either instead of or as well as autism.

The attached graphic detached itself, sorry, here it is

Could be another neurodiverse issue such as ADHD, sensory processing disorder or dyspraxia.

Many people I know (including my own child) have been sent away with a "not autism" diagnosis but their child still displays many genuine traits.

We have been referred several times: twice by school, once by a paediatrician, and all three times we've been told there are autistic traits but not enough for a diagnosis. We definitely did not go "diagnosis shopping" as someone posted above 🙄.

Having said all that, it's impossible to tell from some words on a screen whether or not your family member has genuine problems or not. I'd be interested to hear their side of the story.

SOme fantastic information on here. Following as I support families and will reread some of the points!

There was someone in one of these threads about 6 months back, who, rather than showing autism as a left-right 'scale' spectrum like that graphic, suggested a graphic more akin to a wheel, with 'segments' representing the seven listed component parts, and each individual plotted as a 'blob' on that wheel.

I know I'm not describing it well, but it made far, far more sense to me that the straight left-right scale. If whoever that was is around and recognises what I'm describing, it would be great to see it once again.

@XDownwiththissortofthingX

There was someone in one of these threads about 6 months back, who, rather than showing autism as a left-right 'scale' spectrum like that graphic, suggested a graphic more akin to a wheel, with 'segments' representing the seven listed component parts, and each individual plotted as a 'blob' on that wheel.

I know I'm not describing it well, but it made far, far more sense to me that the straight left-right scale. If whoever that was is around and recognises what I'm describing, it would be great to see it once again.

I've seen this graphic too - like looking at an open umbrella from a birds eye view.

Speaking of umbrellas, there is also a train of thought that ASD, ADHD, dyslexia and dyspraxia are all really just "sectors" of one umbrella disorder. And that some people just have more of the traits of one part. There is certainly a huge overlap between these disorders and I'm hearing of more and more people all the time who are being diagnosed with 2 or 3 of these together.

I can't link brilliantly at the moment but if you google "is autism linear?" You will find the circles rather than lines. There is a good comic on it.

Rebecca Burgess

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

If the child/young person has been referred for assessment then the parents of the child/young person are legally entitled to a second opinion. A GP can then refer to GOSH HFA clinic where over several appointments multidisciplinary assessments are carried out. SALT, OT, EP, clinical psychologist etc. ADOS is just part of it. CAMHs is just part of it.

It is shocking that people think that school staff are part of the diagnostic process. They are really not. They can provide information about issues in school, they can refer to outreach but they do not have authority to diagnose or block referral to a health practitioner.

When my son was diagnosed by GOSH (who noted that reams of evidence had been present for years) the first comment in their report reprimanded the school for their ignorance. The school had submitted lots of 'evidence' that DS was 'fine' but all assessments carried out by GOSH said the opposite. GOSH were being polite calling them ignorant rather than lying bastards. Or at best wilfully ignorant because he wouldn't be their 'problem' to fund in 12 months.

Autism is a lifelong condition. You are parents for life. Healthcare is for life. School is transitory.

I don't know if this graphic might be helpful to describe the segmented wheel model?

Also for everyone talking about how many times she's been referred and assessed - you can't get accepted for an assessment without grounds for concern so if she's being accepted onto he service then there is evidence to support her need for an assessment.

Fab thanks

So has she always behaved in these kinds of ways or is it new, OP?

My youngest dd can be very controlling, maybe looking up pathological demand avoidance might help you OP?

It's very common for people who mask their autism well (which isn't just girls btw) to get missed. Our son was missed for years, but we were constantly told he wasn't because 'he made eye contact' 'he has friends' blah blah. Some clinicians are seriously outdated! He was an angel behaviour wise (overly complaint) so that also didn't help as everyone assumes asd kids have raging meltdowns and are 'naughty' and disruptive. By the time he got to high school he seriously wasn't coping and we went private in the end and he was diagnosed, they couldn't understand why the nhs hadn't diagnosed him. His dad also got diagnosed just before him (nhs). So I fully believe she could have asd and just isn't getting a diagnosis. One of my daughters is also very very social, which again makes a lot of people think she can't possibly have asd. You will also find one day she might be fine with something and they next she's not, this can be confusing but it all depends on anxiety levels at any given moment and they can fluctuate wildly (from second to second with one of mine!). The control is probably also anxiety related.

Thought that said 'slimming' there. I was like 'no, definitely crap at that one'

I'm so sorry to anyone I've offended with my choice of words in the first post. I didn't mean to do that. I'm trying to understand how she is thinking so I can try to see things how she does, so I don't inadvertently do the wrong thing and make things worse for her.

Like if she was colour blind, there's pictures online that show what colour blind people see so it's fairly easy to understand their difficulties.

Autism is something I know little about so it is hard for me to understand how she is seeing/feeling/thinking things but finding out more about it is something I mean with care for her not nastiness.

Thanks for all the links and comments. I know it's not a "one size fits all" thing and there's loads of different aspects to it so it's been really helpful hearing what people have said with their own experiences. Even just the pie thing. I just thought pie was pie. I've never sat and thought about how the shape, texture, filling and everything else could make a difference.