To think that anyone who has an autism assessment gets diagnosed as having autism.

[Cruncheyleaves]

If you had an autism assessment and weren't diagnosed with autism o
what happened?

Were you offered/suggested other assessments?

Was there any support available?

Did they think your behaviour was down to trauma/upbringing instead?

How did you feel?

Wow Sing thats so similar to my backgorund. I was superbright and "no toruble" at school but had crippling anxiety. I was also in an abusive home. As an adult Ive had counselling for the abuse but often thought it didn't explain it all. I didnt consider autism until my duaghter was diagnosed as Id put so much of my quirks down to the high iq or to not having a propwr home so "}I never learnt how to do people/makeup/go out."

I know children who have been through Autism assessment and not gotten a diagnosis. They often end up with a different related diagnosis like sensory processing disorder, social communication disorder, pervasive development disorder, oppositions defiant disorder.

I think my other daughter is likely autistic too but doesnt display it in ways that would mean school would push an assessment.

Im kind of waiting for her to find life hard, and then have a list of things I think might be the case...

My son had a borderline ASD assessment at 5. By 10 he was referred back as his therapist felt he had ASD and/or his infant reflexes had not gone dormant (manifests in autistic traits). By 11 he had an extensive and very expensive private high functioning autistic assessment - by this stage we had undertaken 5 months of brushing therapy to help his infant reflexes go dormant - and the assement's conclusion was while it was clear he had previously displayed autistic traits he no longer had any. After the brushing therapy he began normal eye contact (previously had none hence the original ASD referral at 5), he now points, knows how to banter and has a wide circle of friends, has reduced his skin sensitivity issues and a lot of other useful changes. If anyone has a child with austic traits I do think its worth researching into whether their infant reflexes have gone dormant.

I had a autism assessment and was told I don't score highly enough for a diagnosis but they were referring me for a ADHD assessment as it is highly likely that I do have ADHD.

I didn't bother as the only adult ADHD assessment place was over 100 miles away and I don't drive.

I wish I had done it sooner. I don't like labels and boxes but many NTs do. It feels weird having what is known as a disability but I am not disabled until I am. For many ND people it is systems and processes that make them more disabled - much of this can be engineered out. It's just that there is a lack of will to do so. There is a reason that ~ 80% of autistic people are unemployed.

This is why jobseeking is a nightmare as I have to mask all the time and my impersonation of a NT person sucks - I get worse at it as I get older.

Think of using little people (adults with restricted growth) as an analogy. Say you are a little person in a town where there is a larger than average number of little people - waves to Peter Dinklage and Susan Calman here. There are step stools on shelves. Shopping assistants reach things down almost without thought. Busses all have low steps. Plenty of bikes. Large municiple buildings have suitable toilets and indoor scooters for little people to use.

Then you get a job in another town - not many little people. You get knocked about a lot because people just aren't used to smaller people. Some people talk down to you thinking you are a kid if they aren't paying attention. You get ID a lot.
Toilets and stairs are a trial. You always seem to be late because cycling is prohibited in most pedestrian places. It kinda sucks.

So yes, I am glad now I have that label but wish I didn't have to.

Some people are more than happy with self diagnosis and that’s great. My oldest friend realised about herself once I’d been diagnosed and I feel she’s absolutely right, but it affects her differently - like Medusa above she doesn’t consider herself to have support needs. She’s had a supportive family and got through qualifications etc into a great job, she keeps her life fairly routine and sticks to socialising with a few safe people, life has gone a bit crazy now she’s had her baby (at 32, I was 20) as that’s brought a lot of unpredictability but she’s managing ok and wouldn’t benefit from being assessed.

I on the other hand just could not rest until I knew. It explained so much but having had an awful time under MH services since I first revealed the abuse I just needed to know. The relief was massive.

It wasn’t until a few years later that I realised I had ADHD too, as I had so many misconceptions. I felt like a failure compared to other “high functioning” [hollow laugh - I hate that term] autistic friends like the one I mentioned who had actually made something of themselves. Realised that my focus was so goddamn terrible that I didn’t even know it was bad 😂 I’m smart but all over the place. Antidepressants had never worked and I realised I was depressed mainly because of feeling like an absolute fail of a human several times a day. So I latched onto the idea of ADHD meds maybe being the answer, and luckily got an NHS diagnosis and treatment - it felt like the final piece of the puzzle.

I would say to anyone wondering about both that it may be worth pursuing the adhd side first - as others have said there is fuck all support for autism anyway but if you are struggling then at least adhd can be medicated. I had the most amazing moment when I was in the gym and realised I had counted to ten reps without getting lost. I nearly cried - before the meds, I would get lost around 4/5 every single time. It was exhausting but it was so ingrained I hadn’t even realised it was happening, until it DIDN’T.

Meds aren’t necessarily an easy fix (I’m currently changing mine and having a rough time) but it’s definitely a reason to try and get referred. For women especially ADHD becomes apparent when you have more responsibilities - the third child, new job etc, suddenly everything falls apart.

Sorry that was a ridiculous amount of waffle 😳

Definitely not (in answer to your title).
Ds is on the pathway and they've been very clear that although he definitely has autistic traits they aren't sure that he will meet the threshold for a diagnosis.

@Cruncheyleaves

I've done so many online tests. Mainly they come out as yes you are likely autistic sometimes on the border. It hasn't given me any sort of closure.

If it's any comfort, everyone I know who did the 'Online Autism tests' came back as '' Possibly being on the spectrum''.

Maybe everyone has traits under a very broad umbrella?

ASD is an umbrella term for many mental and physical health impairments.

Do you ever trip/fall over, even when there's no hazard? (Dyspraxia)

Most children/adults have traits of ASD.

What a terrible thing to say. No, people who are assessed don't always get diagnosed

@TryingNotToPanicOverCovid

I would like to know as saying I'm autistic when I haven't been diagnosed as such would seem fraudulent. It would make a huge difference to me.

I've also spent the last few years wondering and would like to know.

I am puzzled by people who think it doesn't make any difference whether or not you know.

My husband is waiting for his assessment.

He is mid 40s, spent years under MH services, heavily medicated. He couldn't understand why all his treatment made very little difference and his diagnosis kept changing.

I mentioned autism to him a while back as certain behaviours started to ring bells, he got a new MH nurse and she too queried autism and couldn't believe that it had never been picked up before. Scored highly on both screeners and awaiting assessment (3 years wait!).

For him knowing will make a huge difference. He has spent years wondering why nothing really changes. Wondering why he gets so overwhelmed at times and why every day is a struggle. For him, understanding himself, and being able to make more sense of his feelings and behaviours and his past could be life changing.

I think it's the case with females, generally. The symptoms tend to be more subtle and girls mask more, I'm told.

I'm struggling to get my DD diagnosed with ADHD even though a professional at CAMHS thought she had it. I am going through the whole process again and expect it to be as frustrating as the other times.

If you think you may be autistic, do pursue a diagnosis (if it's something you want). Not everyone receives a diagnosis of ASD so it isn't a given.
I would also recommend finding more information from charities/groups that support people with autism (diagnosed or suspected).
Some of the suggestions on this thread (not all!) about what autism encompasses are inaccurate and frustrating to read.

I know a lot about autism. My brother was diagnosed when he was young, he's quite clearly autistic. I also went through the diagnosis process with him as an adult as he needed one here in the UK. He only had to wait 8 weeks between being referred and having the assessment!! I know this is unusual and will likely not be that quick for myself.
I've worked for years with autistic people.

I just dont trust my own judgement of being autistic myself as I don't think I can be objective about myself.

I definitely mask when around people. I'm only able to gradually let my marks down once I've know people for many years.

I’m definitely expecting more difficulty with DD1 for ADHD. We’ve finally got an appt for DS who scored off the scale when we had a private screening with a charity. Being older she did a self report one and scored borderline but just like me she often doesn’t realise when she’s unfocused - if you’ve never been focused how can you tell?!

I so relate to your DH U2 being resistant to MH treatment is so depressing in itself as it makes you feel even more like a failure, and like the professionals will be frustrated with you or think you aren’t trying. I’m a fucking veteran of therapy, I have worked SO hard just to stay alive, frankly.

I seriously wonder how different life might have been if my autism and adhd were picked up on in my teens. I was an inpatient for months, and had psychotherapy for a few years. I don’t resent them for not realising, really - even then (~20 years ago) female autism/ADHD were so little understood, and I can see why all my issues were put down to the abuse that I’d only recently disclosed. But looking back I think it was mostly burnout that put me there rather than trauma.

I wonder if it is more helpful to read / research and self diagnose and work from there, unless a
Diagnosis would help with EHCP or occupational health stuff in work environments??

Please do not self-diagnose. I see this all of the time - people who are awkward socially self-diagnose as autistic and then tell everyone that they are autistic.

Would you self-diagnose cancer and then tell everyone you had cancer? Would you self-diagnose a broken leg and then tell everyone you had a broken leg?

I say this as someone who jumped through the hoops of getting an assessment and found out that, yes, I am on the spectrum (Asperger's).

I know someone who was convinced her son had autism, he was assessed and he wasn't. He was removed from her care eventually though and lives with his dad now.

We just received a folder of the assessment and its conclusion- no- that was it.

ASD is an umbrella term for many mental and physical health impairments.

No, it is not. It is a cognitive condition that often has co-morbidities like dyslexia / dyspraxia / depression / anxiety.

@AlfonsoTheTerrible

ASD is an umbrella term for many mental and physical health impairments.

No, it is not. It is a cognitive condition that often has co-morbidities like dyslexia / dyspraxia / depression / anxiety.

I was thinking the same, unfortunately I have a few diagnoses alongside autism, but it's in no way an umbrella term for them.

I’ve name changed for this

It’s not true that everyone gets a diagnosis. I work in the NHS and also for a private diagnostics clinic.

Some places will offer a private screening appointment for a fraction of the cost of a full assessment. Have you looked into that?

We offer a 1.5 hour appointment with two members of the team. We ask lots of questions that guide our thinking, and we make observations. Then we tell you whether we think you’d be likely to meet criteria for a diagnosis. It’s almost always clear to us at the end of the appointment.

If not autism, we generally signpost to other types of service. But tbh, we see a lot of adult women and the vast majority are indeed autistic, they are often very well clued up on autism by the time they come to see us. They are paying, so they only tend to come when they are really quite sure.

About 15% of our paediatric assessments are found not to be autistic. We assess for other things like IQ, ADHD, sensory processing disorder. Sometimes when it’s not autism, it’s SPD or learning disability. It’s rarely ADHD alone.

@Willyoujustbequiet

No my dd didnt. She got a different diagnosis.

I actually think some professionals on the periphery ( teachers in the main) were too quick to jump to autism when I'd done some research and it didnt fit. I was proven right in the end.

I second this, because autism in women is becoming more recognised some professionals are too keen to apply diagnosis, ignoring anything that contradicts it and attempting to make 'evidence' fit the diagnosis.

I say 'some' professionals- it seems anecdotally clear that many women are being correctly diagnosed.

I say 'some' professionals- it seems anecdotally clear that many women are being correctly diagnosed.

I was diagnosed at the Autism Research Centre in Cambridge, which specialises in assessing adults.

No, I became friendly with another mum going through the diagnosis process at the same time, my ds got a diagnosis of autism, hers was given a diagnosis of global development delay