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?

The whole process sounds so different now. My son was diagnosed 11 years ago when he was 4. We where told he was probably autistic when he was 3. He then had various assessments and observations over the next 12 months. The final diagnosis appointment was about 2 hours long and with a professor of neurology. No camhs involvement at all (until recently for OCD). It was a straightforward process and quite in depth.

My 7 year old has been going through the assessment process for nearly 3 years now and we dont seem to be much further forward. So. Much. Waiting

So actually your son HASNT been diagnosed with autism ? I'm confused by your posts...

Ooh what an interesting thread. Without meaning to offend anyone, I've always struggled with the assertion on here that "you can't be a little bit autistic". From what many people have described about their dc and the diagnostic process, it certainly seems like it's possible to be "borderline autistic".

I'm really interested in this because I believe that several of us in my family are either autistic or borderline autistic. None are diagnosed, but at least two I suspect would be diagnosed autistic if they were to pursue a diagnosis. Others of us I think are more borderline, including myself, and my dd1 who is very like me.

I massively struggled to fit in as a child and was badly bullied for years. I was just "odd" socially. As a teen and young adult, things improved as I learned more social skills, but I still struggled with friendships a bit, partly I think as I hadn't had positive friendships to practice on as a kid. However, now I'm in my 40s, I have plenty of nice friends and get on fine socially. It's almost like I learned to mask so well that it became innate :) Or maybe I'm simply not autistic at all but just had slow social development. However I do have other signs too, but all are subtle. I'd love to know, out of curiosity, whether I would meet the criteria or not.

OP good luck with your ds. Whether you end up with a diagnosis or not, perhaps the open discussions you've had will help him recognise, accept and manage any traits he has.

I think a lot depends on the child and the circumstances. My DD has extensive testing prior to her diagnosis. Not just for autism but for other things too so they could be ruled out eg ADHD, BPD. Also being female, they were aware that there may be a lot of masking going on, so the testing had to be thorough. It took 3 years and dozens of appointments.

10 years later and we were in and out in half an hour for DS. The consultant said that when you see little boys with autism all day, every day, it's easy to spot. Add to that DD's diagnosis and then mine, plus the referral from the school psychologist, she didn't see the point in testing for something which was obvious.

DD2 was referred in year 5. I had concerns since before she was at preschool. She went to 3 different schools and was home educated for a time. (She didn't cope with the first 2 schools and was HE while we investigated our options).

DD2 had an extensive referral form - I wrote down everything I could remember from about 18 months old to present day. That was enough for the CAMHS worker to skip the first two meetings (which were essentially 'where are you thinking this is going/what would you like us to do?' meetings).

Finally, 2 years later, DD2 had her ADOS. I sat in because she wouldn't go with the assessors without me. I thought it was very thorough. Her report discusses engagement, eye contact, body language, vocabulary, interaction, etc. For example, they picked up that when they asked her to look at a picture book and explain it, she used the word 'ambushed' three times. She was asked to follow a pattern with some tangram pieces, but the assessor held back some of the pieces. It was clear that DD2 was stuck because she knew that the pieces were behind the assessor's hands, but the only way to get them was to actually ask for them, which would require speaking to them, which she didn't want to do. Yet, she'd been given a task and couldn't complete it, which was really uncomfortable, too.

There were things she was asked to do that I know she did because a grown up told her to do them, and if I had asked her to do them she would have point blank refused.

Conversations around relationships and emotions was where she really fell apart - she clearly didn't have the ability to understand other people's need for companionship with people. She told them that she was going to live with husky dogs, not people

The next day, we went back and had the 3DI assessment. All our responses were put into the computer and it scored them.

Then, the psychologist took us through the ADOS and 3DI results, which both met the threshold for ASD diagnosis.

Ah yes, Tony Attwood, demonstrating that parents aren't always the best judge of whether their own children are autistic.
www.theguardian.com/society/2017/sep/25/why-the-world-expert-on-aspergers-took-30-years-to-notice-condition-in-his-own-son

DisappearingGirl Anyone can have autistic traits. It's the concentration of the traits, their presence from childhood and the impact it has on someone's daily life which means the difference between diagnosis or not. www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Also autism is rarely present alone, there are usually one or more co-morbids present too.

@Oblomov20
Been in similar situation accused of FII as have others I know
It’s terrifying how this gets thrown at parents I think this is partly why my ds will not be assessed despite professionals making referrals so he will miss out on early help
It’s disgusting how this happens

When groups are allowed to meet again, perhaps you could try an ASD youth club or similar. DS was diagnosed at 2 years old, a very obvious and straightforward diagnosis, which I completely agree with.

I only mention a club or group because then you would get the opportunity to chat with other parents there. I’m constantly amazed by the little things that our children with ASD have in common. By chatting with others you may discover behaviours/traits/quirks which you had always thought of as being specific to your DS, but actually are part of his Autism.

I know what you mean. I never thought DS was autistic but he had lots of issues in primary school and he was diagnosed at 8. Now he is 13 and a completely different kid (we didn't do any therapies or anything after he was diagnosed). In all honesty I wonder if he were reassessed now if he would still get the diagnosis. I don't really worry about it though - it doesn't make any difference to his life having the diagnosis anyway. I remember during the sessions we saw the psychologist we were trying to remember all the things he did as a child and I'm sure half the stuff I recalled was false memories . I mean who can remember if their child used to point at stuff?

As the clinical psych said when DS got his ASC diagnosis "he's somewhere between eccentric and Asperger's... he might not quite tick all the boxes but I like to be creative in my diagnoses".

But this was after a lot of investigation and observation and interviews - interview with a SALT who tested all his conversational skills and even I could see where they suddenly broke down; observations from his class teacher including questionnaires; ditto from me and DH; session with clinical psych, interview and tests with developmental pediatritian who even came and observed him at school as well.

It's not black and white and the diagnosis has to rely on clinical judgment. And because ASCs are not physical and don't have a long history behind them there is even more subjectivity than many other conditions. On the other hand the box-ticking approach can can stop a child getting the help they need. My DSis nearly didn't get diagnosed wirh appendicitis because the pain was in the wrong place but the consulant used his judgment and they operated just in time to prevent peritonitis. Turned out her appendix was in the wrong place. For mental health conditions which have no physical markers at all - well who knows.

As an adult it would be entirely up to your DS who he tells. I told DS to tell student support when he went to university. This information is not shared with teaching staff etc unless the student agrees. My DS did not need accommodations at university. But I teach in a university and it's tough on students who do need accommodations and don't have a diagnosis. It's not like school where support and accommodations are based on access to the curriculum for all. At university they're based on disability and must be formally diagnosed.

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.

Surely he retracted on the basis that the early evidence from school was unreliable and you didn't describe any early evidence yourself?

Whilst i know she was meaning this as a complement, does this mean that parents with easier-to-diagnose children are less supportive?!

No it doesn't mean that. In settings that perfectly meet my DS's needs - such as his nursery, and his university, DS could fly under the radar. In other settings such as school and work, his difficulties are more obvious. Some parents can accommodate their children's needs so that they become hidden. Other parents - maybe because of something as simple as meeting the conflicting demands of a sibling - can't.

It just gives you an opportunity to think about whether you were holding your son up more than you realised - supporting him, avoiding situations that he couldn't cope with etc. Or not.

I felt at every turn I was being asked to diagnose my own child,

Not really, it sounds more as you were being asked if you saw these signs or not. Did they assume that you already know what all the signs are? That would be very sloppy of them.

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.

Well, usually someone needs to have seen signs in early childhood if someone was around to see them. You didn't see any of the signs and it turns out the school didn't really see any signs either. This is "evidence of absence" - people who knew your child saw that he had no signs at all. No big tantrums or absences or upsets; no rigidity; no friendship issues. Etc. Etc. It's one thing to say, we can't talk to anyone who knew him at that age so maybe we should look for other evidence later on; it's quite different to say "we found people who knew him well (such as yourself) and they say none of the signs were present".

However.. they should not just have asked about "signs of autism". They should have asked specifically "did he do this, or that, or that, or that..." and gone though all the different signs one by one.

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.

It now comes under autism especially in the US, not sure if it still exists as a diagnosis on the UK. DS was originally diagnosed with Asperger's, he now identifies as autistic, and that's what a medical certificate would probably say. people still is use it less formally to characterise more rigid/ intelligent/ articulate/ anxious peeople with autism.

It sounds as if you have been thrown into a lot of emotional conflict about this. Give yourself and your son some time to process

@Didiplanthis he has No diagnosis

@DisappearingGirl thanks, yes the discussions with him have been helpful I think. You sound interesting! regarding myself, i am not autistic, have a few traits perhaps and come from an neurodiverse family. i am very well informed about autism because i was worried about one of my other children from a young age, he had loads of red flags, but then grew out of them

@AmaryllisNightAndDay yes you are right, the retracted on the basis of unreliable evidence from school and lack of our own observations of anything odd in his younger years. They did probe a lot about this, with both DH and I. It was the only thorough thing about the assessment IMO and I felt it put too much responsibility on us.

@BlankTimes ah yes, I am familiar with the Tony Attwood story. I'm afraid it does lower his credibility in my eyes and he does seem to have fallen out of favour a bit more generally. I also wonder if there is an element of those in the professional autism community seeing autism everywhere to the exclusion of other possibilities/diagnoses?!

so just to summarise, the things i found shocking about the process was the following:

hardly any time spent with DS, no observations or anything like others have described
a lot of credence given to a single teacher - mostly this would be fine, but problematic when you have mistakes as in our case
too much responsibility on us as parents to make the decision - we were constantly asked what we thought to the point when i said i wasn't sure, the diagnosis was retracted on the spot.

i've had sleepless nights wondering about all of it and feel that i haven't had the benefit of a 'expert' view to help us work through it

My older daughter is currently going through assessment- we both initially very shocked by a possible diagnosis as we as a family have learnt to live with her traits and put in place certain things, it had never crossed our mind these traits could have been Autism and she is amazingly good at masking. She is so well behaved and no trouble. But I know she can’t cope with changes and I know what food she only eats for example (this is just some of them).

It was only when the physiatrist said to us imagine you had your children the other way round and it clicked. Our 2nd is easier things don’t seem to challenge her the same way - she would wear whatever and played independently for example, doesn’t need an exact time to leave and if it changes doesn’t meltdown!
The minute he said that to us it made sense we could see that our support helps her with the masking. It doesn’t matter whether it comes back either way she is our daughter and quirks in all :)

I think it's very hard to compare your child with a 'typical child'. When DD1 was very young, I thought something was amiss, but was told I was neurotic. Long story short, she has significant SN and goes to special school. She's now just starting the ASD assessment process at almost 15.

When DD2 came along, she actually played with toys. She would try to put a blanket on a doll and move a train around the tracks. I thought she was a flaming genius!!

It was only when DD3 came along, and she didn't just try to put the blanket on the doll (then get furious because it wouldn't lie flat) or move trains around the track, but actually had a 'story' that they were enacting, that I realised that DD2 wasn't doing everything that you might expect a child to do.

DD1 was chaotic and wouldn't play alongside other children at all. She just bombed around the room, doing whatever she pleased, with an attention span of less than 30 seconds. One memorable morning, she walked across the floor at preschool, picked up a paintbrush, dipped it in the paint and made a streak up the easel, before dropping the paint brush over her shoulder and walking on).

DD2 was far more organised in her behaviour. But all her preschool photos are of her, on her own. She wouldn't join in with other kids. Barely acknowledged their presence. She did what she was interested in, no more, no less.

DD3 had friends at preschool!! But it was only once I had DD3 that I realised that sort of thing happened.

@lougle yes I think siblings are a huge part of how we conceptualise our kids, but in my case ds is my most easy going and flexible child, which is one of the things that makes it so confusing.

it was a co-morbid we spotted first with DS, but when a diagnosis of that didnt explain other stuff that was going on, i pushed for other assessments.

There were 'red flags' from birth when i look back and frame his habits/behaviours in terms of his current myriad of physical and neurological diagnosis, but at the time, it wouldn't have occurred to me that they were odd as there were other things he excelled in

You’re so right about having no sense of “typical” @Lougle. I’d always felt that my DD (first child) was different to her peers but I really had no comparison. She was difficult from a young toddler, really hard work. I used to think I was just unlucky to have such a highly strung child. She never played with anything, ever. Would only engage with screens. On the other hand very bright and verbal. I used to grill her teachers at school about her focus and her friendships but they never had any concerns. She was a well behaved, academically able kid so as far as they were concerned, there were no issues.

Then my son came along and his differences were more obvious. I stopped worrying about DD and focused on him. It was only when I was sure that he was autistic that my attention returned to her

Anyway, long story short I am now convinced she’s autistic too. Two years ago I would have brushed off the suggestion entirely. Their presentations are so different, and quite typical of ASD in boys vs girls. Just need to work on getting her assessed - I have no idea how long the waiting lists have become this year.