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?

@zzizzer

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?)

I gave my assessor lovely feedback, too, because she treated me like the intelligent adult I am.

I think you should try to get assessed

I know one guy who had a screening assessment and told there was no point doing a full assessment as he does not have it. He tells people he has ASD and uses it to excuse shitty behaviour.
And another who had a full assessment and was also told he did not have it. Goes round telling people the doctors were wrong and has since self-diagnosed himself.

I see this a lot on autism and adhd groups on Facebook @XenoBitch parents telling other parents to just constantly push for second/third opinions. There seems to be a lack of acceptance that not all children receive a diagnosis because they in fact are not autistic.

I personally see a lot of parents whose children have not been adequately assessed in the NHS. Years ago I saw many more, so I think it must be improving. These days I tend to see people privately who don’t want to wait.

In the years I’ve been working privately (ten years) I can think of only a handful of parents who seemed hell bent on getting their child a diagnosis. One in particular, and another one who wanted their child ‘measured’ for autism every two years to see if they were ‘getting better.’

The vast majority seem to know their children very well and know that something has been missed.

I have 2 dc diagnosed ASD. I would like a diagnosis to over ride erroneous diagnosis made 40 years ago that has dogged me ever since. But my GP treats me like an unexplored bomb that can't even have access to their patient summary

I am also mute in hospital situations when in pain. The eye rolling and infantilising is awful to experience. I can still see them, i just can't talk. Normally I'm articulate - educated to masters level - but struck 'dumb'. Would a diagnosis bring empathy?

@zzizzer

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".

I'm not Autistic, my 3 boys are. So I'm looking in and trying to understand, but I only know how It feels as a parent. This post really resonates with me. The Autistic adults I know find the whole Autism is a superpower type portrayal patronising and damaging.

I have my own MH and chronic health issues that means in very different ways that my life is set on difficult mode. I never wanted that for my children. Diagnosis was heartbreaking because I knew that it meant my DC lives would involve extra barriers they'd need to overcome. Because their lives would be set on difficult mode.

Everyday things I've never had to think twice about are a struggle for my boys. Sensory input can completely overwhelm them. Just going to the supermarket is a marathon of sensory inputs to endure. Every moment of school mornings are planned, there is a constant exhausting need for scaffolding just to get them through the day.

My eldest isnt even 10 yet and already feels like there's no place for him in this world. His words. It's heartbreaking. He is getting counselling, but it's a slow process with no guarantees. My middle boy cries and wonders what's wrong with him that he never gets birthday or playdate invites. I love my boys exactly as they are, but the world is far less accepting and too judgemental of neurodiversity.

Thanks kintjusi, and I'm sorry that you have to watch from the outside. Sometimes its worse to watch someone in pain than to be in pain yourself.

It's hurtful that we get ignored or shut down if we try to tackle it too. I mean, you've seen it on this thread. I honestly wasn't trying to be rude or nasty yesterday, I was trying to reach out about something which someone said that was hurtful.

Overall I can only guess that its the easy, comforting lie for dealing with the discomfort that can come from encountering disabled people: "Okay, you struggle with XYZ but your superpowers make up for it right? You are amazing, what a hero!"

I am certain that it is not intended maliciously. But it can come across like "shush, there isn't a problem here!"

Imagine a world where instead people said "okay, you have autism which means yes, in your case you clearly struggle with XYZ. So what would help? What adjustments would help you cope?" - without any "nonsense, there's no such thing as normal or weird anyway" stuff.

kintsuji, sorry! Typing from memory on the phone app is never a great idea

@zzizzer, that was a lovely and thoughtful post.

I work in a field where kids are often referred for assessment for ASCs and I would say that

(a) the decision to refer for assessment (at least on the NHS) is not taken lightly and usually only when a number of different people agree that there are ASD traits and also that they are affecting functioning

(b) since people only get referred for assessment if there are strong indications they have it it wouldn't be surprising if a large number of people referred do have a diagnosis confirmed, but

(c) it is not at all uncommon for people to be told after assessment that they don't meet the criteria.

@zzizzer

Thanks kintjusi, and I'm sorry that you have to watch from the outside. Sometimes its worse to watch someone in pain than to be in pain yourself.

It's hurtful that we get ignored or shut down if we try to tackle it too. I mean, you've seen it on this thread. I honestly wasn't trying to be rude or nasty yesterday, I was trying to reach out about something which someone said that was hurtful.

Overall I can only guess that its the easy, comforting lie for dealing with the discomfort that can come from encountering disabled people: "Okay, you struggle with XYZ but your superpowers make up for it right? You are amazing, what a hero!"

I am certain that it is not intended maliciously. But it can come across like "shush, there isn't a problem here!"

Imagine a world where instead people said "okay, you have autism which means yes, in your case you clearly struggle with XYZ. So what would help? What adjustments would help you cope?" - without any "nonsense, there's no such thing as normal or weird anyway" stuff.

I just wanted to agree with this, couldn't say it any better myself, but being told I'm amazing or I have superpowers is patronising, especially being a grown adult. To be honest, I wouldn't be too happy with someone saying the same to my kids if they were ever to be assessed. There are some ways in which being autistic has benefited me, but overall it has made my life a lot more difficult and personally, I would rather not be autistic given the choice.

I agree, namechanged. There are no "positive" aspects of being on the spectrum - it sucks.

I would also ask people not to use stereotypes and cliches when describing us like "Many people...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)" or "Often when an autistic woman tells us her life story, I think, ‘wow, you’re amazing.’ They never think they are amazing."

I would like to be listened to, though, when I am talking about my experiences of being autistic.

I got my assessment easily cuz my older brother got a diagnosis. So yeah, nepotism. But I also got my diagnosis and this helped a lot. If only I had had it earlier, school might have been a lot easier.

I think there are positives of being on the spectrum. My autistic husband is at the forefront of scientific research in his field. His autism affects his abiltiy to see patterns and make connections that nobody else can see. He firmly believes he would not have got to where he is if he wasn't autistic. He recognises his privilege though, in that his work subject has been his special interest since he was a teen. He gets paid to do what he'd be doing even if he didn't get paid.

My autistic DD is now a special needs teacher, working with teens in mainstream school. Her own autism gives her a unique insight into the needs of her students. She knows their struggles even when they can't voice them themselves.

I'm not sure what my positives are, probably being able to see the positives for others despite being utterly useless myself.

Not at all. My DS was diagnosed as SPD mood regulation issues.
It is extremely hard to get a diagnosis unless non verbal, my DS has high executive functioning.
Passed onto camhs extensive interviews and tests carried out, assumed ADHD as he has high cognitive functioning but not verified.
Finally after DS started beating DC/teacher during meltdown if they broke any rules he was reassessed and diagnosed with ASD.

No, they don't. Good luck with getting your referral.

My workplace has a copy of my certificate on file so they know. They also are very supportive, not only of my autism but of my crippling anxiety.

I've had a referral accepted for ASD assessment, as has DH, but funding for such things being what it is, it's been made clear we're unlikely to ever reach the top.of a waiting list unless I have another mental breakdown or he can't cope (which he does with my support - we balance each other's deficits very well). I think it's been over 4 years, now?

All our kids have ASD (youngest is provisional as it was online), and two assessors said it was obvious it was inherited from both me and DH, before apologising - luckily we found it funny. We're lucky to be part of a big clan of family with ASD diagnoses and many more who.could have had.one if they'd been a bit younger. All have PhDs or are high school dropouts, or both. So we have the support there to help us feel that we're fine, it's the rest of the world that's weird. Hopefully none of the younger generation will commit suicide.

I figured ASD was pretty likely but participating in a research project looking at prisoners and others with various MH symptoms to see how many had autism, the assessor said I definitely didn't - but then from her reasons, no-one I knew would meet the criteria either (like reading a story with expression and discussing pictures, because if you've read up on child.psychology there are rules on how to read to small children). The worrying thing was how many prisoners they were diagnosing even with the most limited diagnosis tool.

I would love to know if the range of scores on the ADOS, DISCO and other questionnaires is bimodal (two peaks representing having ASD or not) or is a fairly smooth range, or maybe all neuro-atypical people get a range of the higher scores? No-one's ever been able to clarify for me.

If it's a fairly smooth progression of scores, wouldn't that lead to diagnosis being based solely on whether you are experiencing problems, or your environement rather than you? For example my daughter was having total inability to cope at primary school in Y3. Tried an hour a day as recommended by Senco from January, and school is suddenly the most wonderful thing ever - because there's only 9 in the class, she has her own desk, no-one touching her, it's quieter - she's no more or less autistic but her ability to cope is transformed.

In answer to your question (and I’m not sure this answers it, but according to how I understood it).

The disco assessment is a developmental history tool. It codes (or gives scores) that align to algorithms based on diagnostic criteria (DSM/ICD). There are some exceptions (and these are scores based on a sliding scale), however on the main, the coding relies on reports of current AND historic presentation. So, effectively, if a child or adult masks their difficulties, these difficulties are still reported on and they count towards the algorithm.

The ADOs is an observational tool split into four modules. The choice of module used depends on the language and developmental level of the person being assessed.

Each module has its own scoring profile, but ultimately all four have a ‘threshold’ or ‘cut off’ score for ASD, with a ceiling score of 28 and the ‘cut off’ for diagnosis falling somewhere around 7-9.

I do loads of these assessments, I’ve done them both today, for example. I’m still not sure I’ve answered your question though.

You may be less likely to get support if you are diagnosed as a lot of stuff Especially mental health is then put down to just being part of being autistic

I think I’m probably autistic but I can’t see the point in getting a diagnosis. As an adult I think it’s only really useful if it would assist you with coming to terms with yourself. My child is diagnosed but he needed the diagnosis to access a specialist asd school

Well the school only put forward children for assessment when they are completely convinced. So, it rather skews the results. The "professionals" like to completely invalidate your experiences as well and tell you it "won't make a difference" to have an assessment. It's an awful process where experts will belittle you. Suggest you are not being entirely truthful and suggest things that have happened didn't affect you the way the did. It is humiliating and soul destroying. No one does it for kicks.

B33, I see a letters written by professionals (to other professionals) with thinly veiled comments suggesting parents are lying or exaggerating.

I listen extra carefully to those parents to make sure I pick it up.

They can give diagnosis of things like Bipolar, ADHD, PDA, ADD. Some of the traits cross over.