for thinking that the ASD diagnosis is not that rigorous?

[ConnectFortyFour]

i know this is a sensitive topic but please be kind as I am currently struggling with this and trying to make sense of it.

i know that current wisdom about ASD is that it is difficult to get diagnosed and it is not possible to be a 'little bit autistic', but this doesn't reflect my recent experience going through the diagnosis process with DS, who is now 14. he was sent for assessment due to experiencing some mental health problems on transition to secondary school. He's had some therapy and is much better now and is in year 10. It took 2.5 years to go through the diagnosis process, but in my opinion that didn't reflect any kind of rigor, just mostly waiting!

His (non) diagnosis is based on the following

An ADOS test - 20 minutes with one SALT. He scored under threshold and the therapist called me in to ask me what i thought! She said intelligent children can be difficult to test. She seemed to be asking me to diagnose my own child! but i was a bit uncomfortable with this.

School reports - i provided masses of these right up to preschool. Mostly pretty generic. No concerns raised but mentioned him being reserved sometimes. There were also some up to date reports from school which were similar.

An parent interview with a SALT (different one). DH and I both attended this. DS wasn't there. Just went through his early years. For context, we didn't have concerns about him in early years and told the SALT this. This is a crucial point as to get a diagnosis you need evidence from early years.

A telephone conversation with a teacher at his former primary school (this is the bit I most struggle with).

When we got to his big diagnosis appointment day, it was with a consultant psychiatrist. He had never met DS up to that point, just read the paperwork. He has said that DS seemed he had a lot of strengths which had perhaps masked his autism up to that point, but he had decided to diagnose him based on a telephone conversation with a teacher at his former primary school. The report from his year 6 teacher was again quite general, but this teacher also reported something that the headteacher had said which was that that DS's reception teacher had mentioned that she thought he might have some early markers of autism, but we as parents had declined to pursue it. i challenged this on the spot as i know this did not happen. There's no way i would have forgotten it!

i spent the rest of the appointment a little in shock but basically the consultant retracted the diagnosis he had planned to make on the basis of the fact we were uncomfortable with it. Also, DS was worried, understandably, about the fact it is lifelong and irreversible.

i actually contacted the school to ask what the hell happened here and they were a bit sheepish and said that it was all a bit rushed - the phone call literally came through the afternoon before our morning appointment the next day so they had no time to consult the reception teacher who actually taught DS as she has not been there for over five years. So the information given to the consultant was based on a conversation the headteacher thought she remembered with this former reception teacher (the headteacher never taught DS).

I'm furious because i know that the headteacher has a very bad reputation with other parents for bullshitting, particularly when she wants to present the school in the best possible light (ie. they didn't miss anything, we did). The consultant sugar coated it by saying possibly there was a mix up with a different child and that it was a long time ago.

The consultant also said that some kids with very supportive parents can sometimes fly under the radar because they are 'scaffolded' and their difficulties are not really apparent, sometimes even until they leave home. Whilst i know she was meaning this as a complement, does this mean that parents with easier-to-diagnose children are less supportive?!

It is possible I am in complete denial about it all but I felt at every turn I was being asked to diagnose my own child, but the truth is I didn't see signs in early childhood (I have for my other children, but that's another story!) and without this they can't diagnose.

the consultant also told DS she saw him as an '''aspergers' type, but this isn't meant to be a diagnosis that even exists anymore.

AIBU for finding it hard to take this process seriously and see it as not at all rigorous?

One of the key criteria is bout the impact it has on life. Children given loads of coping strategies manage life better and may appear to be less impacted.

As people get older, of course, their own perceptions then become key. DBiL without doubt fits the criteria, but would argue long and hard he doesn't because his limitations are 'choices'. He has no social contact outside work- lives alone, never had a relationship. He has a very limited diet. He has had a specific work history- slow getting work despite being exceptionally intelligent- as on an entry level jobseeker Type scheme despite and excellent degree from a top uni. Stayed with that company until he was made redundant.

He has organised his life around certain very limiting parameters.
However he'd never ask for a diagnosis or see his 'choices' as anything other than freely chosen.

Sorry, but you can't be a little bit autistic. It's not a severity spectrum. There isn't really such a thing as "mild" autism and certainly not in relation to learning needs (people sometimes think non verbal autism with learning needs is severe, whereas those without learning needs have "mild" problems. Not true).

Any autistic person might have a good day, a masking day, a meltdown day, a catatonic day. "High functioning" autistic people trying to mask and manage in a neurotypical world can experience mental health problems, burnout, etc. It's really not a "mild to severe" spectrum. It's a "features and nuances" spectrum.

@CulturallyAppropriatedName

Sorry, but you can't be a little bit autistic. It's not a severity spectrum. There isn't really such a thing as "mild" autism and certainly not in relation to learning needs (people sometimes think non verbal autism with learning needs is severe, whereas those without learning needs have "mild" problems. Not true).

Any autistic person might have a good day, a masking day, a meltdown day, a catatonic day. "High functioning" autistic people trying to mask and manage in a neurotypical world can experience mental health problems, burnout, etc. It's really not a "mild to severe" spectrum. It's a "features and nuances" spectrum.

Absolutely my eldest is extremely intelligent but can't cope in mainstream school.

That process doesn't sound very rigorous. I would try not to get too hung up on it though, or let you DS. A diagnosis doesn't change who he is. It will hopefully just open the door to more support, should he need it. If he doesn't need it, great. The option is still there for the future. He's not going to get branded on the forehead or anything though if he doesn't want to make a 'thing' of it.

Ahhh I get it. Teachers think he might be but you dont. But they diagnosed him anyway. I wouldn't worry about it, it means if he is autistic and he starts struggling then help will be with him sooner. If he doesn't need extra help then dont ask for it. It's really not like a big sticker that gets stuck to your head for the rest of your life. My mum didn't think I was autistic, I had to get my own diagnosis as an adult. That's because she's undiagnosed autistic so I was normal to her.

My 16 year old dd was diagnosed in April after a three year wait and various assessments. I actually ended up having 4 hours worth of interviews and she at least 2.
I found the process to be very drawn out but also pretty rigorous and the professionals were amazing at seeing through her skilled masking techniques. I was scared they wouldn't be able to.
Sorry your experience wasn't so great

@CulturallyAppropriatedName although I disagree that different people dont have autism to different degrees. I think they do. I do agree that how we identify good maskers as those with "mild" autism is really shit. People assess it on the autistic persons effect on those around them, rather than the effect of autism on the person.

Exactly, @nottherealslimshady

"Mild" autism tends to mean "affects other people mildly". Wrong.

Both my DS were diagnosed with Aspergers at 8, both are academic stars. The older has always stood out and felt different. The younger always surrounded by lots of friends and popular, but teacher noticed that he struggles in class. What I'm doing differently with the younger is talking to him about it as something to help him understand himself better, but that he does not need to tell everyone else about it as this has caused problems for the older one. Hope this helps you.

I was diagnosed at 40. I didn't want my parents to know I was seeking a diagnosis so they weren't involved to talk about early years but there was enough to go on from the questionnaires and a three hour face to face assessment.

At the end of the day, it is a judgment call. The boundaries of what is and what isn't, are decided by people observing from the outside. It's not that autistic people are a different species, especially with Asperger's (which is what my diagnosis would have been under the old system). The differences are quite subtle.

My most obvious presentation is anxiety. I'm in bed now having got stressed and upset over something. For years, it was thought to be MH issues. Autism does feel like a better fit to me though and I see traits in three generations of my family.

My daughter's assessment at 14 seemed substantially more rigorous. In her case we did have odd bits going back earlier - joining a school-based preschool class at 4 having done a preschool year at nursery already, they decided she needed to be encouraged to socialise at the sand and water trays (we'd moved her because we actually felt she was ready for school and thought they'd do more with her, autumn birthday). Surprised us at the time as she'd talked early and much and always seemed very confident and sociable. Later on, perhaps age 8+ she seemed to grow away from her peer group in terms of interests, and I think I first wondered about ASD when she was 9. The biggest thing looking back is that she has always been an anxious personality. When I mentioned ASD to her perhaps age 12 or so she found the concept extremely helpful and read up on it extensively, and then when I brought up the subject with a tutor at school got the "I'm so glad you've mentioned that" response. We pursued the diagnosis after much consideration because we felt it would help her understand and accept herself, and gain confidence to speak up if she couldn't cope with a situation for example. She's just turned18 and doing very well but by gosh did lockdown make us aware of how "autistic" her reactions can be at times. We learnt to spot the signs that she absolutely needed to be sent out for a walk or a bike ride to avoid meltdowns for instance!

By contrast our youngest was seen by CAMHS age 10 and "autistic traits" were suggested; there was no pressure to have him formally assessed and in fact every encouragement to leave it at that unless things changed. As it happened, the maturity he gained over the next couple of years meant that the issues sometimes of concern at school eased off and he's found his niche. Now 15, he presents as geeky but comfortable in his own skin, has several good friends and I'm much more confident that he's going to find his path in life than I am with his sister. (nb he's lucky with his friends, for instance they have their eyes on winning the national cipher challenge this year or next if possible ...)

With DS1 we had multiple sessions over a few months with a Camhs psychologist going over history, many tests and ADOS - he asked all sorts of questions of all of us. DS was 8 and DH had never seen his behaviour as atypical but the psychologist was very firm at pointing out how a "normal" child would answer. And he asked for copies of all of his school and nursery reports. Now school were very sure there wasn't a problem he just wasn't trying hard enough - but it was all in the nursery reports, which I'd diligently read at the time and not put 2 and 2 together. They described lots of autistic behaviours, but without labelling it as such. At the end I didnt feel there was any question about it. He was 8.

With DS2 we filled out 2 or 3 multiple choice questionnaires (as did his teacher, but she'd written DS1's name at the top and faxed them in so they were inaccurate and illegible) and saw a paediatrician for 30 minutes who read them in front of us and gave us a diagnosis. We went for a private consult after that as I wasn't totally convinced! He was 7.

By 14 though their behaviour is totally normal to you, and also they will have so many coping mechanisms- as will you - that it must be very very hard.

“Who says you can’t be a “little bit” Austistic?
‘Cause you can. It’s a spectrum.”

The best info graphic I have seen about Autism showed it as an actual spectrum - as in a light spectrum - not a sliding scale of mild to severe. I’m sure it’s not perfect but it’s a helpful way for me to think about it.

neuroclastic.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

Sounds like so many people have had much more thorough assessments than us. Lucky you!

For those saying that the pandemic must be to blame, that isn't the case. Ds only face to face part of the assessment (the ados which took less than 30 mins) was actually about a year ago. It just took them ages to put the paperwork together and consult school (the night before our actual diagnosis appt

im not sure what its like now, but i do know from having been in the autism community on FB that the process differs widely from district to district.

For us, it was done via reports provided by Ed.Psych, SALT, Occupational Therapist who provided therapy for another health issue, LSAT (might be wrong word, but its the in school assessment on his educational level)... DS also had an ASD specialist come into school and assess him and provide a report.

CAMHs came out to our house to meet DS, then we both had to go to speak to the CAMHs Dr, spent a good hour going over the reports, discussing his behaviour, both historical and current.. then had to do the ADOS test, then a discussion with just me.

The whole process was maybe only 3 actual meetings, but the run up/information gathering took about 2 years of assessments, therapy, other professionals, in school interventions....etc

Do you have any autistic tendencies.... ? Only asking as when I went through one of the longer questionaires as part of my daughter's referal I thought lots of the autistic things were "normal" as in "normal for me!". I strongly suspect I am now as Ive read so much about women with autism and its different to the stereotype in my head!

My ds and dd were diagnosed early and the assessment process was entirely different. They had multi disciplinary assessments with assessments by SALT, OT, Child psychologist, paediatrician, Ed psych, Early years specialist teacher. They attended CDC nursery sessions weekly and assessment took six months. Neither were in educational settings when they were assessed but had they been they would also have been part of the process. I have no doubts that their dignoses were correct.

I think it’s much easier to diagnose when they’re younger - before they’ve learned to mask

AIBU for finding it hard to take this process seriously and see it as not at all rigorous?

It’s hard to be rigorous though, isn’t it? It’s not like a blood test or a chromosome test that comes back positive or negative, it’s ultimately a question of box ticking certain behaviours until the child scores over a threshold.

The consultant also said that some kids with very supportive parents can sometimes fly under the radar because they are 'scaffolded' and their difficulties are not really apparent, sometimes even until they leave home. Whilst i know she was meaning this as a complement, does this mean that parents with easier-to-diagnose children are less supportive?!

No, and I think you’re being a bit obtuse. It makes perfect sense to me that some parents meet the needs of their child so well (with quite some hardship on their part, I can imagine, in terms of missing out on some aspects of family life that others take for granted - holidays, activities etc) their child’s autism isn’t “seen” as much, in terms of meltdowns, sensory overwhelm etc. I’m sure this happens quite often. That’s not to say that those children with more overt traits have shit parents.

i spent the rest of the appointment a little in shock but basically the consultant retracted the diagnosis he had planned to make on the basis of the fact we were uncomfortable with it. Also, DS was worried, understandably, about the fact it is lifelong and irreversible.

I think this is key. It sounds like you as a family were against your son having a “borderline” diagnosis because you feel it would be stigmatising for him. But equally you seem angry that he hasn’t been given a diagnosis, because clearly he has struggles and autism would account for that?

In my experience, as a parent you play a crucial role in diagnosing your child. It sounds like you feel this was wrong and it was the HCPs job, like they should be able to see the autism without your input? It doesn’t work like that - you know your child best. My child was diagnosed using a screening test that required a parental interview only.

I would be questioning a 20 minute ADOS with only one clinician tbh.

Thanks for commenting everyone. The more I hear about others much more thorough assessments, the more I think we were short changed with ours.

Our Aspergers assessment including ADOS was extremely extensive. School disputed it, by contacting the camhs lead consultant directly, and then they went as far reported me to SS claiming I had munchausens and tried to get both ds's removed saying I was an unfit mother.

Yours this sounds much more superficial, which seems a shame.

😲

Ours was a triage tick sheet from our perspective and his teachers perspective. Then an hour q&a on with a clinician at CAHMs who observed him, then a 2 hour develoomental history thing with lots of questions. Then the ados was with 2 people and took around an hour and a half, maybe a little less.

I actually sat in on the ados and I suppose it was really clear to me for the first time thst he was autistic seeing how he responded. It wasnt what i expected it to be like.

Sounds like so many people have had much more thorough assessments than us. Lucky you!

DS was diagnosed when he was three and it was really kinda obvious as his presentation was typical of autism. He has HFA which I would expect to be dx'd earlier than Aspergers, as the sole difference between the two is the presence or otherwise of speech delay. So a toddler whose speech and language isn't progressing as their carers would expect would be more likely to be seen by HCPs than a toddler who is using speech to communicate in the typical way. (Often a child with Aspergers would be advanced in the language they used, but naturally that is usually seen as a sign of intelligence and not as a cause for concern, even if the child bypasses the normal babbling and fudged word-making phases and goes straight into using sentences correctly formed). It was Tony Attwood who made this distinction between Aspergers and HFA, and also made the intelligence distinction between HFA and Low Functioning Autism.

I have a book which quite handily contains the criteria used in part of the diagnostic process. It outlines the triad of difficulties and has a list of markers for each part with a number given of how many markers was needed, eg there are six markers in this section, four or more indicates autism. So if the person tested only scored three out of the six, it was considered "has autistic traits" rather than "has autism". (No idea if this method is outdated now, but I imagine even at the time there were other factors considered.)

I'm sure there are other aspects taken into consideration, and often other clinicians involved, but sometimes someone presents so typically it's not necessary to conduct further tests, and equally, it can become obvious that the person does not present enough difficulties to warrant further investigation into autism. My own son's assessment was not particularly drawn out, he had been seen by the Ed Psych (in school setting), a SALT for his language difficulties and two developmental paediatricians, both of whom read the extensive notes I provided on DS's developmental progress and my concerns about him. It didn't take long for them to conclude that the diagnosis was apt and correct, but I am satisfied that the amount of assessment actually done was sufficient. For children with more complex presentations, it will take longer, more professionals involved and more diagnostic tools.

In short, your son's assessment to conclude that he doesn't have autism was probably adequate but in no way representative of the diagnostic process for children who do present with the classic signs of autism. So you can't really judge by your one experienced example.

Autism is a spectrum so there is a degree of difficulty with those who are high functioning, plus the traits overlap with other medical conditions especially in young kids. My DD's diagnosis was with a consultant psychiatrist (well second diagnosis as she was initially diagnosed overseas) lasted over an hour and he had reports from her school, her therapist and me. It does rely on reports because there's no blood test etc