How do you know if you're autistic?

[ivegotamillionkids]

Posting for traffic and don't know how to vote as I'm on the app but...

How do you know?

I'm approaching 50 and not been formally diagnosed, but I have felt different my whole life.

Did you just go to your GP and say you've always felt different? How does this work? So fed up right now.

I have never felt 'normal' my entire life, and Christmas brings this home Every. Single. Year.

I just want it to all go away. And never see a person again. I would love to just live in my own little bubble of loneliness on a desert island. And then it would probably still be weird!

Anyone want to join me?

Often the wheels come off in the form of depression, anxiety, an ED or other mental health struggles

Yes . I’ve been in and out of this (more often out, which is fortunate ) since I was 21
Who knows if I am autistic , or I have a lot of traits .
where I struggle is male to female relationships . I now wonder if I went for asd guys as maybe we clicked more , or they got me?
My ex , well he is , well he was tricky
And never ever ever would admit he has challenges

Thisisworsethananticpated

Please do keep a comprehensive diary of all changes in your son's differences, (they may well change as he matures, some fade into the background and others appear) diaried notes are helpful for appointments, assessments, recommendations etc. It will also be very useful when you apply for DLA, PIP at 16 and for EHCP etc.

I'm only an NT parent of a now late twenties adult DD with ASD as a primary diagnosis with lots of co-morbids. My experience is of her difficulties and my fight to get them recognised and interventions to help her. I knew she was different from being very little, she couldn't speak clearly but she could read and write aged 3, it's called Hyperlexia and now is recognised as a red flag for neurodiversity, but no-one would listen to me to discuss the disparity in her achievements, e.g. she missed many milestones and was different to her peers socially and physically. I was accused of being a helicopter parent and fobbed off at every turn.

I've also learned the hard way that many people who should know about autism/neurodiversity and should be helpful can be downright obstructive and even abusive.

Neither school nor the GP would acknowledge her differences until she was 10 and was diagnosed with sensory processing disorder by a lovely OT but of course that was not enough to get her any help. Another 15 years and finally an ASD diagnosis after many assessments for common co-morbids as she also has some physical conditions too.

I've learned to observe how she copes or doesn't in different situations and to be able to relay that to help her and her teachers and medics and complete complex forms along the way. She cannot advocate for herself.

Nowadays, there's much more awareness of autism in schools and gradually it's seeping into the wider community but there's so much prejudice, ignorance and denial still there, it's not an easy journey for parents today.

We each have to advocate for our children and that involves a huge amount of learning about how they cope (or not) in different environments, we need to know what's available and how to access it, we need to find out what we can do at home to make things easier for them and try our best to help them to be as independent as they can.

santaclothes Thank-you for your kind words

If in UK go to gp with test scores expect to be fobbed off. Ask for talking therapy. Do a six session course. Be referred on to more in-depth therapy. They can refer your for assessment. Not quick but free.

OP, it's never too late for a diagnosis. The only problem is that waiting lists are long, services are underfunded and many GPs are dismissive making it hard to get a referral. My DS (12) is currently being assessed and it's a very long winded process but I've been told unofficially that he more than likely does have autism. The psychiatrist would like to refer him to a speech therapist as he scored low on the communication skills assessment but as he isn't severe, she reckons it will be rejected due to funding issues.

I've known all his life that there's something there, that he's different, that he struggles in so many aspects but I was ignored and dismissed at every turn. I almost wept with joy when we finally did get a referral and only because it took poor DS having a MH breakdown during lockdown and I was finally taken seriously. I feel I have some traits but I score very low on online questionnaires. I've felt odd and different all my life, maybe that's just me then. But DH has many traits and most of his family has VERY obvious traits. Nobody has been officially diagnosed tbough, mainly because they're in denial but it's frustrating because DS's diagnosis would be smoother if there was evidence of autism in the family. His practitioner told me this.

@Thisisworsethananticpated with my son he fell apart in year 6, it was a very unsettled year with covid, bullying and a stream of supplies as his teacher left midyear. He's doing so much better in secondary, as he prefers a different teacher for every lesson. He told me in primary if the teacher was in a bad mood they would shout all day (sensory issues and anxiety spiking with shouting), and he was stuck with that same teacher. He doesn't have that problem now. He struggled to fit in in his small primary but has found his tribe at secondary and made friends. He's masking well at the moment but it's always a worry when something will become a trigger.

I was assessed (and diagnosed) aged 45. What actually happened was I was filling in the forms for my son's assessment and ended up realising that I scored pretty high. I then went to my GP and asked to be referred.

After a few weeks wait (that's likely to be much longer now) I was contacted by the adult mental health team and after a couple of phone appointments was offered an assessment.

The actual assessment is very similar to the child assessment. They talk through why you feel you may have autism, any diagnosis you already have, autism is very often misdiagnosed in females, I already had depression and social anxiety as my diagnosis (these are also common co-dx). They also run a series of tests, my (least) favourite was they gave me some props and asked me to use them to tell a story, I had no idea how to do that.

I will warn you the assessment is mentally very draining, I was in pieces for the rest of the day and very stimmy for days after.

Then depending on how obvious it is they may tell you the results straight away or take some time after to collate the results. Apparently mine was very obvious, from the moment I got to the appointment 30min early (I don't do late) and then asked them to take out the ticking clock before we started (because I knew that would.be all I could concentrate on).

I didn't suspect I was autistic until ds was diagnosed age 9. I didn't really know anything about autism at all. I was diagnosed 2 years ago age 53. I did an online test & scored 41which suggested I was in the severe category. I have been treated for clinical depression since I was 17 & now wonder how much of this was really part of my autism.

I don't have friends, just people I know. I was badly bullied at school & didn't do anywhere near as well as I should have done. I have obsessions, it could be types of books, food, things I collect. I have meltdowns, I don't do people, hate social situations. I have dyspraxia, I am clumsy, mega untidy & am unable to tidy up because it is like being at the bottom of a mountain & cannot work out how to start to climb up. I get sensory overload, going in a supermarket is my worse nightmare, the lights, sounds, smells & people, I have left my full trolley & run out before now, lockdown has been my saviour, I wish it could last forever.

@Thisisworsethananticpated

I’m a bit wary of people doing online quizzes to diagnose themself if I’m being honest. I don’t mean this critically , or nastily It just doesn’t sit with me

And maybe this is down to not quite believing our own diagnosis , from a very experienced psychiatrist

Where do we draw the line between autistic traits and autism itself?

I also don’t understand why HFA is offensive , primarily as this term was used in the diagnosis letter . Who do I listen to , a psych or someone on MN

Sorry it’s new and raw for me , but as diagnosis and awareness ramps up I think there are going to be more diagnosis of ‘HFA’ societally

2022 is going to be a year when I educate myself on this issue better
It’s just where to start

The HFA isn't offensive as such, it's more that it minimises the struggles of those that would be labelled as such. As the consultant said to me as she said I would have been described as high functioning a few years earlier, its a bit like saying that you're a "little but autistic". It minimises the fact that our autism still affects every part of our life and for those of us that didn't get the dx until we'll into our adult life affects every part of our growing up and everything that has gone before.

For example I don't do late and can't walk in to a room full of people without support. So at school if I was even a minute late for a class I simply wouldn't have gone, then because I didn't go to the previous class and knew I would have attention drawn to that I wouldn't go to the next, etc, etc, etc. Which means I didn't perform as well at school as I would have with support.

@Thisisworsethananticpated

who struggle to accept that their child may have a disability and they feel the need to mention their high IQ or 'giftedness' because they think that means that they will be 'like NT' people and will not be someone who has a disability

It feels very bald and confronting to read of this as a disability
I’ve actually never thought of it that way
And again I’m not being ableist ! My dad was disabled , had the blue sticker and I saw his challenges day in and day out

And yet , I’ve just had a major build completed and somewhere at the back of my mind - I’m thinking my son may not be getting his gcse and a level in any hurry
And I’m thinking of making this a home for life if he needs it

Please do bear with me , we only had assessment last summer and as he denies it , his dad totally denies it (an ex ) and his sibling too it’s really bloody hard to own it

Can I ask about masking ? I’m
Convinced my son masked for a while and then at about 9 the wheels started to come off

And I’m Confused why he coped at primary (less to the end ) and literally can’t do secondary

This is a really useful thread
I’m learning shed loads
Thanks 🙏

Disability is a one size fits all word which doesn't accurately reflect the many people who fall under its umbrella. Autistic people see, communicate and sense their experiences of the world differently and may need support,empathy, adjustment etc to thrive. So you could view that as disability in the broader sense of the word but actually it's a different way of being . And generally it's non autistic people that have issue with difference.

I score in the mild autism range. I only began thinking about it since our dd began having difficulties. I often looked at her and could see so much of me in her, the big difference being that she's very confident in many social situations and speaks her mind, whereas I've always been an introvert. I always used to feel different but just thought that's how everyone feels. I don't feel I need a diagnosis tbh, I've got to the stage where I accept myself, quite like me and don't feel compelled to change any more. It hasn't had a debilitating impact on my life, particularly as an adult (I struggled with feeling different and getting bullied at school though). I've done OK for myself, my family and adult friends value me and like me (I think!) And that's all that really matters. It helps that my parents always valued difference, so I always felt accepted in the world by the people who meant the most to me.

@Whatafustercluck

I score in the mild autism range. I only began thinking about it since our dd began having difficulties. I often looked at her and could see so much of me in her, the big difference being that she's very confident in many social situations and speaks her mind, whereas I've always been an introvert. I always used to feel different but just thought that's how everyone feels. I don't feel I need a diagnosis tbh, I've got to the stage where I accept myself, quite like me and don't feel compelled to change any more. It hasn't had a debilitating impact on my life, particularly as an adult (I struggled with feeling different and getting bullied at school though). I've done OK for myself, my family and adult friends value me and like me (I think!) And that's all that really matters. It helps that my parents always valued difference, so I always felt accepted in the world by the people who meant the most to me.

The fact that it doesn't impact your daily life is probably an indicator that you wouldn't meet the criteria for diagnosis.

Disclaimer I am not directing this at the poster I replied to above, but they did give me the thoughts...

It's interesting the squabbles that take place over the potential harm functioning labels can cause. I feel that the adults who say they are probably autistic but don't need a diagnosis because they manage just fine cause more harm than someone adding a HF label. People are quite dismissive of the struggles autistic people face, even those who seem to be coping and that kind of talk just cements the idea that autistic people are 'fine'. The people who question the reason to go for an assessment because a diagnosis won't change anything are really misunderstanding themselves. If a diagnosis wouldn't make the slightest bit of difference to someone's life it's highly likely that person wouldn't get the diagnosis if assessed anyway.

I think I’ve learnt more on this thread than I have since he was diagnosed !!!
Appreciate everyone’s input , I can’t tell you how helpful this is for me

I’ve ordered the book ‘odd girl out’

But it does look like an ECHP is my next project

The fact that it doesn't impact your daily life is probably an indicator that you wouldn't meet the criteria for diagnosis

I think this nails it
I maybe am , maybe I have the traits
But now I’m on SSRI and can work from home indefinitely , I’m ok 😂

Next question , how does one get a 13 year old to accept their diagnosis - and that’s semi joking as I know there are no easy answers

And generally it's non autistic people that have issue with difference

This is interesting

@santaclothes you are probably right that I wouldn't get a diagnosis. But that in itself is interesting isn't it? In that we are currently struggling to get a diagnosis for our 5yo dd, presumably because her difficulties are not pervasive enough. She masks the hell out her day. The result is that this morning, she began having sensory issues over putting on her clothes. I tried to keep things calm, said we were in no hurry, I could see she was beginning to feel 'fizzy' and didn't want it to escalate, so backed off and said we could try again when she's calmer. Out of nowhere, she came at me with her fist clenched and punched me as hard as she could, then kicked me in the stomach. Nobody will assess her because academically she's doing well and at school she displays none of this behaviour - so it must be our parenting, right? It no longer impacts my day to day life. When I was a teenager I cried myself to sleep many times because I didn't quite fit in. I cut myself etc. Nobody would have known that though.

I want a diagnosis for our dd because although he difficulties are not obvious at school, her behaviours impact on the whole family. I want her to know it's ok to be different, but we don't know what we should be doing to help her and I feel sad at the thought of her going through her teenage years trying to 'fit in' and struggling with her mental health. I don't want her to have a label, but that label is fine by me if it means she gets the support and understanding she needs to thrive.

For me, I no longer have the struggles I did. But i can see our dd having a lot of struggles if we don't receive some expert support for our family soon.

Also, in response to those questioning why some parents feel the need to qualify their child's autism by saying things like "she's high functioning" or "is highly intelligent". I can only speak for myself, obviously, but girls in particular mask exceptionally well and many do well academically. So well, in fact, that they fly under the radar because they're not stereotypically 'autistic enough'. That's because the world has always had the Rainman view of autism. Girls in particular are misdiagnosed with anxiety disorders or sensory processing disorder or completely undiagnosed because they don't meet the required criteria of displaying difficulties in two different settings (usually home and school) - they usually mask well at school, for example, and do well with the routine of the classroom. I often qualify my description of our dd with phrases such as 'meets/ exceeds milestones' and 'converses well and makes friends easily'. My reasons for doing so are because I want people to understand that autism is not one size fits all. And I want people to know that girls in particular are struggling longer and harder than necessary to keep their masks on, to the detriment of their mental health, because the world still holds the Rainman view of being neuro diverse. She is bright. She is socially capable. But compared to her peers, her emotional regulation is problematic and her sensory problems often mean we're unable to leave the house or do normal things as a family any more. Yet still we hear "there's nothing wrong with her" and "well, she's always fine when she's here!"

The people who question the reason to go for an assessment because a diagnosis won't change anything are really misunderstanding themselves. If a diagnosis wouldn't make the slightest bit of difference to someone's life it's highly likely that person wouldn't get the diagnosis if assessed anyway

This, with large jingly jangly multicoloured seasonal bells on!

To receive a diagnosis,
The DSM-5 Manual defines autism spectrum disorder as “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning.
Emphasis on the to the extent that these impair everyday functioning
That's also why there's no such thing as 'mild autism' if someone is not impacted to the extent that their traits “limit and impair everyday functioning” then they will not receive a diagnosis.
www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Similarly, a medical diagnosis of autism is not a label, they are for jars of jam and suitcases

Whatafustercluck sorry to see you're struggling to get a referral for your DD.

You need to make a case as the GP's likely to think if her behaviour is only happening at home and not school, then there's a good chance it's parenting not neurodiversity. This is 'wrongthink' on the GP's part, but again it's how the system works and is something parents have to battle with.

I'd suggest you spend some time and document instances of your DD's 'different to peers behaviour' in different locations like supermarket/shopping centre, the park, childrens party, playdate at home, playdate at host's, group activity, team activity, solo activity, her response to instructions from you and from other adults. The object of this is to outline where and how her behaviour is different to her peers and to provide enough evidence that an assessment is needed.

All behaviour is communication, so maybe read as much as you can about likely triggers, especially sensory ones. This is a great place to start.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Also, you may find that making your communication to her more direct has a better effect.
In your example above, your wording to her about "we could try again when she's calmer." is vague. Maybe she needs more structure with instructions.
Have you tried now, next and then instructions with her, so she knows what's happening right now, what will happen immediately and what will happen after that.
Often neurodiverse kids are 'lost' because their need for order is missing. (School can be very orderly hence showing no signs there)

Instead of saying something like "we could try again when you're calmer" which isn't specific, try reframing that to Now you're upset, next we'll have a hug (or whatever calming thing she responds to) and then we'll put your socks on.

It takes a lot of time and a lot of different parenting skills and economy with words, but it's worthwhile.

I'd also suggest if it's possible for you, a private diagnosis for your DD, carried out by a team who also diagnose for the NHS, that way the NHS/LA cannot argue that the diagnosis isn't valid.

In the interim, a private assessment by a sensory paediatric OT could also provide evidence that your GP would take notice of for further referral if you want to pursue a NHS assessment.

Ross Greene's Lives in the Balance and The Explosive Child are worth a look for reasons why your child lashes out and interventions to help.

Free printable resources for tasks like now, next and then instructions and much, much more are available from www.twinkl.co.uk/

@Pheasantplucker2
Often the wheels come off in the form of depression, anxiety, an ED or other mental health struggles

I'm embarrassed to say that this struck me with blinding obviousness. This is me, since my teens (now nearing 50). But I've always always ascribed my chronic depression to life factors, things beyond my control, things that have happened to me, rather than me being different or ND.

But I am still would not get an assessment because a diagnosis is improbable for me, because my life isn't being limited... or so I've always believed. DH and I just accommodate each other's quirks, we've made our life to suit ourselves. I'm not trying to talk myself out of a diagnosis out of shame or fear, but because I don't think it would serve any purpose.

For our kids (late teens) it would have been so so much better if they had had an early diagnosis. But 10 years ago when they were in primary school, ASD seemed to be pretty much a "boy thing" and my kids were not disruptive or causing their teachers any problems. The wheels really came off in secondary school which led to their diagnoses :/

Fast forward 10 years, their primary school teacher looks back (now with more experience and knowledge of ASD) and thinks for sure my kids exhibited ASD traits and that explained a lot of their behaviour - the frustration I felt when I heard this! The years of misery when we were ignorant and kids undiagnosed :(

@Whatafustercluck I'm so sorry you and your daughter are not being supported by school. Can you try for a referral via the GP? In our area one can self-refer via CAMHS too, even though the NHS waiting list is long. If at all possible, could you try for a private assessment? There's potentially a lot of support for school aged kids, once a diagnosis is made, we parents just have to push to get there

the to the extent that these impair everyday functioning

This is the phrase that keeps coming back to me.
That Sarah H video linked above is good
It’s also heavy watching

As when she shows that rather complex chart with complex reasoning , it makes me aware that I’ve avoided studying autism as it’s too painful.
I’m like the person she cites as an example who throw their important letters away

Whatafustercluck

I’m sending my 🙏 for what you have with your DD. She sounds lovely

My sons problems are similar to some of what you say
This year I’ve tried to be more accepting of where my son is at
I’d rather have him in his room 24/7 - but ok and calm and safe and not triggered
I’d rather keep him stable and work out how we get him educated , and if he misses 3 years/ well so be it ! I want him alive and with me x

And of course letting my son sit in his room all the time , is something we are judged for and it does t feel nice always

Thisisworsethananticpated

Next question , how does one get a 13 year old to accept their diagnosis - and that’s semi joking as I know there are no easy answers

Keep at it, basically, take every positive opportunity you can.

Make a point of emphasising different does not equal wrong whenever there's an opportunity.
Also emphasize different can be desirable because it's rare and sought after.
Use whatever he's interested in to make the point.

Computers all do the same things, but Mac and Windows use different operating systems. They do the same things, but they do them in a different way.

Have you read this with him?
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

What is he interested in?

What activity can he do to boost his self-esteem? Are there any famous neurodiverse people,associated with that activity, e.g. wildlife Chris Packham, photography David Bailey.

Have you researched youtube, tiktok etc. for people who present autism in a favourable way that he would relate to.
I like www.purpleella.com/category/autistic-spectrum/ but he may well prefer someone else.

@Whatafustercluck

Also, in response to those questioning why some parents feel the need to qualify their child's autism by saying things like "she's high functioning" or "is highly intelligent". I can only speak for myself, obviously, but girls in particular mask exceptionally well and many do well academically. So well, in fact, that they fly under the radar because they're not stereotypically 'autistic enough'. That's because the world has always had the Rainman view of autism. Girls in particular are misdiagnosed with anxiety disorders or sensory processing disorder or completely undiagnosed because they don't meet the required criteria of displaying difficulties in two different settings (usually home and school) - they usually mask well at school, for example, and do well with the routine of the classroom. I often qualify my description of our dd with phrases such as 'meets/ exceeds milestones' and 'converses well and makes friends easily'. My reasons for doing so are because I want people to understand that autism is not one size fits all. And I want people to know that girls in particular are struggling longer and harder than necessary to keep their masks on, to the detriment of their mental health, because the world still holds the Rainman view of being neuro diverse. She is bright. She is socially capable. But compared to her peers, her emotional regulation is problematic and her sensory problems often mean we're unable to leave the house or do normal things as a family any more. Yet still we hear "there's nothing wrong with her" and "well, she's always fine when she's here!"

I totally agree with you. My child sounds similar to yours. She's only five, but she masks so well. Most people say 'there's nothing wrong with her!'. She's bright, capable, loves learning, has a few friends and actually loves school. She toilets independently and trained with no issues, just a little later than 'normal'. She sleeps well. Her diet is fairly limited but she eats from all food groups, including fruit and veg. Her needs were such that she was diagnosed at just age 3. At 5, she cannot:

• Cope with other children's unpredictable behaviour, ironically especially those with SEN in her class who struggle to regulate their own emotions and are noisy or lash out, that terrifies her
• Cope with the typical noise of a KS1 classroom
• Cope without unplanned change to routine
• Understand a lot of social behaviour
• Process information at the same speed at her peers

She has severe meltdowns at home. Even though she is very able, she has full time 1-1 support at school under an EHCP.

I've said this on MN before, I understand why we've lost the distinction between 'types' of autism BUT I actually think it's a bit unhelpful in some ways. My child is impaired, no doubt about it. But, with the right support she will, we hope, be able to live a fully independent adult life, with appropriate adjustments. She should hopefully be able to get a good job and live relatively 'normally' (like I do, as a late diagnosed autistic adult).

I know she (we) have the same condition as those who are for example non-verbal, unable to cope with or attend mainstream school, whom unfortunately may not be able to ever live independently and will always need care. However I feel that it does a disservice to those children to say that our children are the same. They're not, and that's not being ableist or saying my child has a 'better' version of autism. My child has different needs, and they are not so severe as some other children. That doesn't take away from the fact that she has very real needs but they are not the same as some other autistic children and to say the two 'types' are the same is a bit offensive in itself, IMO.

Having a high IQ/ doing very well academically has actually made it worse for me as this stopped my autism being recognised. Therefore no support and a life which spiralled out of control.
Intelligence and qualifications did me no good for the 20+ interviews I failed because I couldn't do eye contact or went off on a tangent not answering the question.

I was late 30s before I held down a job for more than a year.

I don't know if I have friends or not as I can't tell what status relationships have. Twice I've hosted parties where no one turned up.

When Facebook first started I had no idea how people could have 200+ friends as I only interacted with less than 10 people a year.

I memorised a book on body language when I was 21 which was great but hid my problems more. I basically studied behaviour/ etiquette/ manners as if it was an academic subject so I could master it as the basics just don't come naturally to me. Eg I still have to check myself to respond 'how are you?' to 'how are you?' rather than going off on a speel as to how my day/ week has been.

But I'm undiagnosed so according to some on this thread I shouldn't call myself autistic.