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?

I completely sympathise with you. My 14 year old daughter was given a diagnosis without an ADOS test (due to Covid) and a lot of the report seemed to rely on my recollections of her infancy. I had absolutely no concerns until puberty, but being a shy toddler seems to have been used as proof of poor social communication etc.
Have you got a positive diagnosis or have they reconsidered? Bear in mind that no extra help will automatically come with a diagnosis, so it may not be worth pursuing if he is unsettled by the process.
Good luck

It is not surprising you are frustrated. It is difficult to diagnose as it's based on behavioural traits. And although I appreciate that you said you can't be 'a little bit autistic, it perhaps isn't as simple as that. It is diagnosed more often these days than in the past, because it is recognised that someone can be on the spectrum at varying levels. As for Asperger's, it's not so much a diagnosis that doesn't exist....it is just called by a different name these days....'high functioning autism', to reflect the fact that it is now believed to be on the spectrum, whereas in the past, I think it was considered to be a different thing altogether.

How do you feel about the possibility? Does your son tick many boxes if you look for the signs and symptoms pages online? I have a child with 'Asperger's' in the family and a few close friends with this diagnosis also. It really comes down to a different way of looking at the world and interacting with people. Without exception, all those that I know are highly intelligent and very sociable and it would be very difficult/pretty impossible to know that there was anything 'different' about them at all really. I think diagnoses are helpful really, only in that people are then able to receive any support that may be useful and to help individuals understand themselves better. A few decades ago and Asperger's would have mostly gone undiagnosed, with people sometimes just considered to be a little eccentric occasionally. I have no doubt that many well known geniuses in our history would be diagnosed with Asperger's these days!

There are always going to be borderline case, especially those were masking can take place. The fact that adults and teenagers are being diagnosed means that of course it can be missed in early childhood. For many of these cases it’s about the benefit of acceptance. The ability to see that how the feel and function have a tangible reason. It helps to move forward. I think mistakes can happen but they are outliers only.

pickledonionsfortea sorry to hear you didn't get the full diagnosis process due to covid. That's shit. I don't know what was in the ADOS test as I wasn't there but it is the thing I most believe as he scored just under threshold, which is where i see him. Agree with you about 'the help' that is available. it is much exaggerated!

somethingsnappy thanks for your response. Yes, DS does tick some boxes and some people do seem to assume he is autistic or at least a 'geeky type' when they meet him. But then it is also true that those same people are also sometimes surprised by some of the things he can do e.g. can be the life and soul of the party at times. its true i do really struggle with the concept of him having a lifelong disability though.

boulshired yes it may be that i personally am just struggling with acceptance here. I had a family member with Aspergers who didn't have a good outcome and that is a key influence. however, DS himself is rather agnostic. We've bought him various books and talked openly about it and there doesn't appear to have been a lightbulb moment for him

and just to be clear, the consultant retracted the initial decision to diganose based on the mix up with school so the actual report says 'does not meet threshold for autism' but if you actually read it it is a right dogs dinner, very confusing

I agree with the last two posts.
There isn't a blood test or X-ray or genetic test or any sort of scan that an diagnose Autism at the moment, therefore there will always be debate about the minority of people that are right on the edges.
Whereas you either are or aren't autistic, there is still a MASSIVE range of how much it impacts upon your life, and they are not wrong in terms of how much intelligent children and also the impact of scaffolding in good schools and in 'aware' parents can support people. I have met many people with excellent jobs, families, realtionships, homes etc, who I would definitely say have autism (whether they have made that known, or even ever accepted a diagnosis themselves). I have also known dozens upon dozens (probably hundreds by now) of children who are so clearly autistic they really don't need any kind of multi-discilinary assessment, you can tell from the first time you meet them (I do work in the area, I'm not just randomly meeting so many children like this in the park or the shops ).
When there isn't a clinical, absolute test, then yes, there will be people that might get a diagnosis that aren't, or, more likely, the other way. But, without a mass input of funding, to provide enough staff to do a better and more thorough job, I have to say I don't think it happens very often that the clinicians get it wrong.

As an adult, I found the diagnostic procedure comprehensive, exhausting and draining myself. But I don't mean to invalidate your experiences.

I can’t even get my ds assessed and I worry he’s missing out on early help 🙁 they reject referrals from SALT and HV every time

How early do you mean by "early years"? Because nobody except me had any concerns about my DS until he was 8, and he was diagnosed a year later when he was just 9. No evidence from early years at all - he was considered a star at nursery and through reception, it wasn't until late into Yr 2 that anyone other than me started to notice anything.

I imagine it's less thorough at the moment. But a negative is easier to get than a positive. My autism diagnosis was rigorous and exhausting. It was hours, but they were awesome and made sure the lighting was comfortable and we had a break in the middle.

It is normal to ask your opinion as you know him best, theres no sure test, so they need a lot of your input and even the doctor thinks that from what she's seen, he's not autistic, a parent being adamant that he is would sway her because you've seen more of him.

It could be that he has some autistic tendencies but not enough to be autistic. Theres three things they need to see, I cant remember what they were but it was something like, difficulties with a certain number of things on the list, adjusted behaviour due to those things, and strong emotional impact when you cant get away from those things. You can not like loud noises but if it doesn't make you want to curl up in a ball or rip your brain out then it doesn't classify as autism

formulation DS was quite severely unwell with a phobia he suddenly developed on transition to secondary school. Without this we would never have been referred. Sorry to hear you are having issues, just for context, this is why we did easily get a referral. and his phobia is much better now.

boobsonthemoon the consultant was ideally looking for evidence in reception or earlier. This is what is missing in DSs case, apart from the unreliable comment from the headteacher. in fact, no concerns throughout primary

I am shocked tbh our referrals were rejected we had similar issues with severe phobia and reactions resulting in a and e plus other more typical asd symptoms yet all referrals rejected I’m so stressed

I was pleasantly surprised at how readily the consultant diagnosed DS. His records go back to being 2 with speech delay and intervention from 3. He was a tough toddler.

I went to the GP when he was 7 with a mindmap of all his traits behaviours and habits, particularly social skills, communication, self care, sensory.

School gave feedback, and while he is accomplished at masking, there were details like his adult depth of knowledge of obscure subjects.

He had a qb test which eliminated ADHD, but shows that the more he conciously tries to focus his concentration, the more he jiggles in a rhythmic way (fortunately for his teacher, it is subtle)

The consultant made observations about things like his eye contact (focusing on a safe person), needing explict instructions and missing implicit understanding such as sitting down after being measured, and his random comments as he followed the conversation.

She decided that there was sufficient evidence. I'd been worrying that it was borderline.

But life is better for knowing. I understand him better and he understands himself better and it removes a layer of frustration and gives us confidence for some adjustments like using a disabled changing room for consistency, so I have space to assist as needed and as a quieter sensory environment.

Have you looked at the diagnostic criteria and do you believe that he meets them?

The Tony Attwood books are very useful for the Aspergers presentation. No they don't diagnose Aspergers anymore but that doesn't mean that it doesn't fit within the general autism criteria.

My 2 both developed fairly normally and weren't picked up in the early years and this is consistent with (what used to be known as aspergers) presentation. Both also masked to the point of breakdown and mental health problems in schools.

I don't doubt that covid has caused changes in the diagnostic process but in my experience they don't tend to diagnose if the criteria are not met.

I don't see ASD as a label for my children btw it is just useful to understand their difficulties. If your child has already experienced difficulties in an educational setting then it might be useful to have a label to ensure his needs are met going into different settings in the future.

My foster son is now 12 and when he was 8ish was put through the ADOS assessment due to concerns I raised after looking after him for two years. He was seen once by an Ed psych just for a casual observation in class but obviously she knew he was in care so I felt she put everything down to that. Then the result of the one ADOS appointment was ‘attachment disorder.’ Obviously bring in care he probably does have some attachment issues but actually I’d read up on attachment disorder and been on courses etc and he didn’t have any of the classic signs of a disorder of that nature. And a relative also said she’d had concerns about autism when he was a toddler and not in care. But it felt like because he was in care it was easier for them to blame all his issues on attachment. At twelve he has definite ‘quirks’ and struggles a bit socially and academically but on the whole is coping.

Could I ask what it is that makes you think he's autistic?

My ds got his adhd diagnoses at 5 and asd at 7.5 the ADHD masked the asd so they couldn't diagnose it until he was medicated for the ADHD. It was 18 months of meetings with education psychologists child psychologists occupational therapist his pediatrician, school and a team of asd specialists (who also diagnosed me too) they were very rigorous and I have no doubt about both of our diagnosis.
When I spoke to my mum about mine she informed me that when I was a child under the care of camhs they had told her that if I was a boy they would have given me a diagnosis then but girls don't get asd so it must be something else. Given how much like me ds is in so many ways I can see it in him but I'm classed as moderately functioning whilst he is low functioning so easier to diagnose. Whereas from the sound of things your ds is high functioning and more difficult to diagnose

formulation sorry to hear that. In our case the phobia was treated first after I pushed heavily for attention from everyone I could think of! The asd assessment took three years though!

@Nottherealslimshady I dont think hes autistic, that's the problem! Or at least I didn't until it was suggested to me.

@BogRollBOGOF ds was an easier toddler than my others, much easier, but some of the things you've said about implicit understanding do resonate

My DS was diagnosed with ASD when he was 6, DD was diagnosed a couple of years later when she was 13.

I have no doubts that DS is autistic, it’s very obvious to many who meet him.
I do have my doubts about DD, she was borderline and the dr and salt deliberated for a couple of hours before diagnosing her. Sometimes I wonder if I just know how to answer the questions to show autism and I do it without realising. Other times I get flashes of ASD behaviour from her and it reminds me why we had her assessed (she’s also very much like her Dad who I’m 100% sure has ASD).

I agree. I was diagnosed with Aspergers when I was 15 and it was the worst thing that ever happened to me.

It started when my cousin got diagnosed and my Aunt remarked that me and her share similarities so that planted the seeds in my Mum’s head. I fell really unwell at the age of 13 with my mental health and was backwards and forwards at CAMHS and my Mum really pushed hard for an ADOS test. She was adamant I had it. They took her view into consideration and I was diagnosed with Aspergers Syndrome. My school were shocked as they never picked up on it and apart from anxiety I didn’t have many obvious symptoms but I know that this is typical in many girls so everyone went along with it.

It always felt wrong to me and whilst I did identify with some of the diagnostic criteria, I didn’t with many others. I had lots of counselling and saw the mental health team into my late teenage years where I was eventually assessed again and was told I didn’t have Aspergers. I was sent back to the mental health team and diagnosed with Borderline Personality Disorder. I was 21 when I eventually got this diagnosis. It took me years to get the proper diagnosis and the help that I needed and this was all due to being incorrectly diagnosed. I fully agree with the final diagnosis I got (although my Mother doesn’t and it has heavily strained our relationship) and after accessing my full medical record for another reason I have come to discover that my diagnosis largely rode on the back of my Mum’s beliefs. So in my case I don’t believe it was rigorous at all.

@cantdothisnow1 when I do online tests ds scores as not autistic, but when I read 'all cats have aspergers' he seemed like a classic case

@Cabinfever10 that sounds significantly more rigorous than the process we went through

@ChronicallyCurious great perspective, thank you

My ds was diagnosed at age 3 1/2. Took nearly 2 years. Ended with a full 3 day assessment before we finally got the diagnosis. He’s 10 now so not sure it’s changed since then or if that was as he was so young.

As someone who has worked on a diagnostic team for 15 years; at the end of the day there is no blood test so it boils down to judgement based on evidence. I would not say the process (we do) lacks rigour at all, but it varies trust to trust.

We would not diagnose based on any 1 piece of evidence. We are looking for evidence of difficulties significant enough to impact daily life in social interaction and communication and in flexibility of thought.

You are being very unreasonable to conclude that all autism diagnoses lack rigour based on your sample of 1 assessment concluded during a pandemic.

What makes you think he is not autistic? (Genuine question!)

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

As for the diagnosis, it will only be given it it is deemed helpful and in the child’s best interests. So in other words, if you don’t want it, they won’t give it to you. Better to err on the side of caution. Better to have some people undiagnosed who prefer it that way, than some people having to live with a diagnosis they hate.
Nothing can be done to ‘cure’ autism. It’s all about whether the diagnosis is helpful or not. It should never be given to a child who does not identify with it or who does not want it.

[quote ConnectFortyFour]@cantdothisnow1 when I do online tests ds scores as not autistic, but when I read 'all cats have aspergers' he seemed like a classic case

@Cabinfever10 that sounds significantly more rigorous than the process we went through

@ChronicallyCurious great perspective, thank you[/quote]
I'd really recommend looking at Tony Attwoods book, it really helped me.