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?

DS was diagnosed with both ASD and ADHD, I have no doubts that he has both and some other neurodiversity he’s also been diagnosed with.

DD (17) was diagnosed with ASD at 14, I’m not sure it fits. Dad was borderline and they decided to diagnose.

A friends DD at 10 had an assessment with a private clinical psychologist who said she didn’t meet the threshold for an ASD diagnosis. A few months later she had an NHS assessment and her DD was diagnosed with ASD.

Meant DD was borderline not dad

They definitely don't, because there have been threads here from people convinced they would be diagnosed and then they weren't. As others have said though its a pretty self selecting group - to push for years through the NHS, or pay privately, you have to have consistently had some major issues, so most of the time you were probably on to something.

But I find the idea that diagnoses are just tossed randomly at anyone who asks for one a bit insulting. Our diagnoses took a long time to get and were draining and difficult, and a bit heartbreaking (because yes there's a reason why we're weird but also we're stuck like this, and actually a lot of people experience life on an easier setting).

Never mind the myth that "everyone is on the spectrum because we all have small traits", which IMO is much like saying "everyone has depression because we feel sad occasionally", or "everyone knows what its like to be blind because we can all close our eyes".

At the age of 58 I asked my GP to refer me for an autism assessment. I had always struggled with so many things in life since a child. GP very reluctant to refer me as he said I had managed this far in life and there was a huge waiting list. But agreed in the end. Referred last February and immediately put on waiting list. By July I had first appointment with psychologist. Second was in September. By October I was told I am not autistic but show a lot of similar traits. Conclusion was my problems were due to childhood trauma and neglect.
Now awaiting CBT
My reason for asking for assessment wasn't to be labelled it was to try to understand why I have always felt different and struggled with anxiety/depression.

Our diagnoses took a long time to get and were draining and difficult, and a bit heartbreaking (because yes there's a reason why we're weird but also we're stuck like this, and actually a lot of people experience life on an easier setting).

At the end of my first assessment session (it was in two parts; for the second part the psychologist discussed my developmental milestones and childhood behaviour with my father, who raised me) the psychologist told me that there were three possibilities: I had (1) autism (2) OCD or (3) personality quirks and that she was leaning toward the third possibility but would not make a diagnosis until she had more information.

When I got her report, I read it and cried for months knowing that I would never be 'normal'.

I think ‘average’ is a better term than ‘normal.’

Who wants to be average? The best people I’ve ever met were autistic.

Alfonso

AutismAssessor, I gently disagree on "average vs normal" and wanted to say something since you're in assessment, I hope this doesn't come across the wrong way.

I think sometimes there's this rush to compensate somehow. There can be this "autism is a blessing, autistic people are brilliant, think how amazing you are at XYZ". It's a kind attempt at "look at the bright side" but the point is that autism remains a disability and its permanent.

Normal, to me, is something like "not suffering sensory issues and being able to communicate well". Who on earth wouldn't want those?

I'm under no delusions that all neurotypical people are happy (they're not) or that they're all super skilled (they're not), but everything a neurotypical person suffers from, I do too, with an added dose of "and your body and brain can't handle this stuff in particular".

I have come to peace with myself as I've grown over. In the least narcissistic way possible, I like myself, and I actually think I'm awesome in many ways where I used to loathe everything about myself. But in spite of that, I'd still choose not to be autistic if I could. Its "life on easy mode" thing as opposed to "life on difficult mode".

When I had an ADHD assessment, I had to fill in a million questionnaires, one of them was looking for signs of other disorders. I know because I recognised some of the questions for narcissistic personality disorder, autism, depression, anxiety (I can't remember what others). According to that I actually met the threshold for OCD but they decided not to pursue a full OCD assessment, because the psychiatrist assessing me felt from what I explained that my OCD traits are learned coping mechanisms to deal with the deficits ADHD leaves me with. For example yes I will check I have turned the oven off/locked the door multiple times, but it's not irrational because I am actually quite likely to have left them on/open.

Also before I went to the clinical interview part I had blood tests, thyroid checks and an EEG in order to check for any deficiencies or brain injury which may have caused similar symptoms.

I would assume an autism diagnosis process is similar - it's the same in the diagnosis criteria - patient must display X number of X, Y, Z behaviour/symptoms, for a sustained period, across multiple situations/environments, and that they are not explained by any other disorder.

So I think if they found that actually symptoms are explained by something else you would move into the process for that. Or if it was only in one particular situation it might be judged to be a reaction to that situation.

My dd is currently being assessed for ASC via CAMHs. They don’t seem to be looking for anything else in the questionnaire mountain we’ve filled in. I thought the questionnaires were very weak and very hard to answer accurately. Had to add a shed load of notes in. My dd was originally diagnosed with dyspraxia and sensory issues aged 10. A shy girl who masked very successfully.No mention of ASC until secondary briefly and then the MH problems hit us. First self harming and now Anorexia. I am so angry nothing was picked up before and I’m amazed more isn’t being done to raise awareness re how girls are being let done. It continues with treatment. A lot of AN sufferers have ASC yet there seems to be a lack of awareness and floundering re how to treat them. The normal methods are really hard to implement if your child has ASC, the advice re alternatives are flimsy. Weak suggestions I could come up with myself that are pretty ineffective. The ASC training and knowledge within the NHS seems shockingly inadequate.

AutismAssessor I’ve read that the DISCO method is better for assessing girls. How accurate is the ADOS method for girls and if CAMHs have referred you what is the likelihood of ending up with a diagnosis?

Sadly in our case we’ve been warned the wait is long and they will treat dd with a diagnosis in mind but not really seeing much difference in reality. Seems like just a tick box. Suspect by the time we get the diagnosis she’ll have left CAMHs anyway. It’s just shocking. Let down in primary as girls often are, then still not getting what she needs as a teen when she really needs it.

I strongly suspect I have ASC too. I’ve heard Lorna Wing are good at assessing women. I may go down that route eventually but focused on dd atm.I get by pretty ok but would love to have a reason for some of the things I have learnt to live with.

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

No. Autism is a diagnosis which is comorbid with mental and physical health conditions. It is a spectrum of neurodiversity and is not a mental health issue.

Most children/adults have traits of ASD

But this doesn't mean that everyone is a bit autistic.

When will people stop spouting this nonsense

@Cruncheyleaves

I read your other thread but didn't post. I was diagnosed 3 weeks ago. I'm 61.

Don't keep befuddling yourself with online tests. I did that too but in the end I had to just ask my GP to refer me because I'd do an online test and each time I did it I didn't quite trust the results (always that there was a strong likelihood that I have Autism). Or I'd watch tons of Ted talks and You tube stuff on adult women with Autism and I'd be thinking oh my god, yes, to so much of it and then I'd think, nope, it can't be I'm just a bit crap because how come I've been able to work and buy a house etc etc.

The process of assessment is quite taxing, or at least it was for me.
I had to have a 3 stage asssement of, firstly, my mental health and then further screening tools, an interview with a clinical psychologist which further screened areas of my functioning, my DD completed lengthy descriptive forms which asked lots of questions, (my parents are dead). And then the final diagnostic interview with the Consultant Clinical Psychologists, which took 90 minutes. I was diagnosed in the appointment and the statement arrived just this week.

I'm still processing it because on one level nothing has changed and yet everything has. So I'd say go and see your GP and ask the question. If you are Autistic you'd be diagnosed and if you're not, an alternative formulation will be made which might offer you an explanation and perhaps some useful pointers.

Good luck.

@zzizzer, thank you! How lovely.

@AutismAssessor, I appreciate what you mean but please don't correct me in how I describe myself as that is incredibly patronising. I put single quotes around the word 'normal' to show that I was using the term in a particular way.

I’m not here to patronise anyone. Genuinely. Yes, autism is a lifelong condition, but it’s also a spectrum condition. Many people that I meet (funnily enough, especially women) have many of what we’d think of as the ‘positive’ aspects of autism. And I don’t mean that they are gifted (a cliche, though many of them are).

I mean they are usually very honest, open people. They often really don’t like lying. They can be really sensitive. They can have good attention to detail, which often means they are in a job requiring exactly that skill, and good at their job.
Many of the women I’ve assessed are highly intelligent.

I have assessed over 800 autistic people so it’s a generalisation, but certainly a theme. Often when an autistic woman tells us her life story, I think, ‘wow, you’re amazing.’ They never think they are amazing. Who does, really?

In answer to the previous question about the DISCO - yes, it’s a much better tool for picking up girls. Usually they’ll have an ADOS anyway, and the sensitivity really depends on the assessor and the process. There are some great assessment teams and some very bad ones. You need to ask for clinicians experienced in diagnosing women and girls and try to insist on the disco.

I’ve got to be really honest and say children are often discharged from Camhs without a diagnosis. You mentioned the Lorna wing centre, yes they are good (I trained there!) but there are other similarly good private clinics around. I get a bit cross when people on MN bad mouth private clinics but recommend the Lorna wing centre - many work in exactly the same model.

Do they get discharged from CAMHs without a diagnosis due to time running out or they get diagnosed as not ASC?

What happens if you’re in the middle of the process. Dd is just 16 so we may just make it. Just done the developmental bit.

@AutismAssessor how did you come to be an assessor? I mean that in a genuinely interested way (thinking of options for my own future career as I am pretty sure I want to work in an autism or ADHD related field), in case it sounds like I’m criticising.

(Overthinking? Me? Never...)

Everything you've said there is really patronising though - however nicely you mean it - and I feel like when two people call you on it in a row, it's worth trying to think it from their perspective.

Yes I am honest and blunt and I have burnt bridges and lost jobs and friendships because of it. I cannot hide my facial expressions well or react appropriately to things. I am very attentive to detail and have fallen short many times due to perfectionism. I am intelligent and analytical and stayed in universities out of fear, with a lot of pointless student debt that did nothing for my long term career or self. These are not superpowers in our society. I am not amazing.

I'm trying to argue back here because this the sort of attitude that autistic people will rarely call you out about in person. We tend to be anxious and grateful for assessment and anything we can get. We will nod and smile.

I can tell you though that the sunny attitude of our assessors (and post-assessment supporters) did grate on me and DH, and did feel patronising, however well-intentioned and kind they were. It felt like we were children.

I'm trying to work out how to spell it out as I expect its hard to fathom on the other side. Imagine someone saying "yes you're anorexic, but on the bright side you're thin and have such discipline with food and exercise, lots of people would love that!"

Or "sure you're depressed but then again you have a much more realistic outlook on life than the rest of us" maybe.

It might all be true but its dismissive of the struggles people go through.

I don't know why but the realities of disabilities just seems to make others uncomfortable. Why is that?

I’m an NHS speech and language therapist by background. I’ve been working for 26 years, specialised in autism then fell into working on a diagnostic team.

Found I loved it, think I’m good at it, never left!

They won’t discharge your daughter from Camhs without completing the process, so if you’re on their pathway (and she’s only 16) then it should be ok.

Many are discharged without a diagnosis because of various complex factors. One of them (to my mind) is huge turnover of staff, which means that you get a lot of young, inexperienced staff who aren’t that great at picking up girls. I pick up some adults in the NHS who have been discharged from Camhs without a diagnosis quite simply because they were under a consultant who had an old fashioned view of autism (and refused to assess them because they didn’t fit this view), or because there was nobody qualified to assess.

I'm always told my DD was easily diagnosed young because "she presents like a boy". Theres only so many times I can hear that phrase!

I’m sorry zzz, I’m not going to engage with you on this. It’s Saturday morning, I’m having a brew and not looking for an argument.

You are entitled to your view, however it’s not typical of the many women I’ve assessed. I’ve had such lovely feedback from them. I’ve never been called patronising.

Happy to answer questions on assessment though.

(Ah the ‘presents like a boy’ chestnut. There are some boys who get missed because they ‘present like a girl!’ - so frustrating)

I was assessed. I think I was about 16. Nothing happened after. They just said I probably had social anxiety, which is exactly what I always thought. I thought it stupid I was even being assessed (no other signs other than just a quiet person!)

Well, I gave lovely feedback too to my assessor. Who was a lovely person.

Christ alive though I'm not looking for a full out argument, I'm looking for some empathy and understanding. (And we're the ones supposedly not great at that?)

OP it is definitely worth pursuing a diagnosis if you think you're autistic. Generally autistic people don't like grey, we like black and white, and self diagnosis is definitely in the grey zone. In my experience the biggest benefit of diagnosis is the certainty. It's like finally getting permission to be yourself rather than fighting to be like everyone else. Only someone who's lived with the confusion of growing up undiagnosed autistic can truly understand the relief of finally being told, officially, that this is the answer. I cried with relief when I got my diagnosis.