Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

Do you think every non autistic person has the same degree of social skills regardless of any other neuro diversity they may have? Do you understand the meaning of the word 'spectrum'?

Your not serious?

1. You simply are misunderstanding

1. You were wrong but don't want to back down so are continuing to try and prove something

1. You are being goady

So, which is it? Because the more you post, the worse it gets

Do you??

eyeteevee agreed. Goady would be the nicest intention I could infer from these terrible posts.

OK then, it seeks to determine if someone has the particular neurological difference known as autism, which I think was pretty clear from what I said.

The other neurological differences are not diagnosed with the same criteria.

What is your point here? That autism is a contrived and meaningless diagnosis? That autism doesn't exist?
PPs are right: you are bordering on offensive.

@AutiMum how did he meet the criteria for diagnosis? It doesn’t sound very clear cut to me in his case.

@Lovelyricepudding

I agree, a diagnosis is ultimately subjective and based on the opinion of the psychologist, on a test that attempts to invoke objectivity. That is the same with most psychology, where a physical test cannot be done, like it could be for high blood pressure or diabetes for instance.

They are also widening the criteria, as I said previously, my son would not have been diagnosed a few years ago had it not been for the recent addition of 'sensory differences.' That's not to say I believe there is anything wrong with autism, there absolutely isn't and it is a neurological difference which should be celebrated and nurtured, but when so much is based on subjectivity of a psychologist and not the individual characteristics of the person, it's very difficult.

No I think it is people don't understand what a spectrum is - they can only see the word in relation to the 'autism spectrum' despite illustrating this with a completely different spectrum - the light spectrum. So when I say there is a spectrum of behaviour they cannot see beyond autism and take offense. If it the criteria were so black and white then why are autistic children not picked up immediately at birth or shortly after? Why watch and wait for preschoolers or primary kids get turned down for a diagnosis only to be picked up as things fall apart at secondary? What are doctors doing if not trying to determine which side of a cut off point a continuous variable lands? Why are so many more people now diagnosed if those cutoff points/criteria had not changed in the last 40 years? May be this is a flaw with the diagnostic criteria -maybe MRI scans or eye tracking software in babies could give a more black and white diagnosis but currently the criteria used are continuous variables (a spectrum) not discreet variables.

What is your point here? That autism is a contrived and meaningless diagnosis? That autism doesn't exist?

People's experiences of autism obviously exist. As I'm sure you know, though, autism has no biomarkers. In the future, when more is known about causes, the category of autism may break up into several conditions, or not. In the meantime, the question is, how useful is this diagnostic category, how fair is it? From the comments here, it sounds as though its useful in several ways but not perfect.

If it the criteria were so black and white then why are autistic children not picked up immediately at birth or shortly after?

Not receiving a diagnosis at birth/shortly afterwards doesn’t mean the criteria aren’t black and white. Unless you also think the criteria to diagnose e.g. chromosome abnormalities aren’t clear cut. Many people with chromosome abnormalities aren’t diagnosed until later in childhood or adulthood or even at all. That doesn’t mean the criteria aren’t clear cut.

I for one (admittedly clueless at that time!) didn't think that labelling a kid as 'different' would be helpful to them. Happy to admit I was totally wrong. My friend told me to think about the diagnostic process as a safety net - whilst my son didn't (seem to) require any particular additional support or accommodations initially, a diagnosis would ensure he could receive them if he ever required them. As my DS has got older (now nearly 14) and more comfortable not 'masking' his condition, it's become increasingly obvious that a) he spent a huge amount of time and energy as a child just trying to fit in and b) he's much happier, more secure and confident now.

If it the criteria were so black and white then why are autistic children not picked up immediately at birth or shortly after?

Because it would be a bit like trying to assess a goldfish. Useless. The criteria are black and white. They are definite. But if you take note of any of the criteria, they don't apply to babies any more then they do goldfish.

@Ifyouknowyouknowyouknow

My DS was diagnosed because he has persistent social communication difficulties. That trait is very clear.

What isn't clear is Criteria 2. The psychologist states in her report that he does not have 'restricted, repetitive patterns of behaviour.' He does have some sensory seeking behaviours, which I question could be down to ADHD. I'm very interested to have him assessed for ADHD (which will also be private) and also trial medication, to see what difference that makes.

Despite his social differences, he is a very independent boy. If I was ill for the day, he could easily take care of himself without my input. He can get himself dressed, do his own breakfast, lunch, entertain himself, tidy up after himself, use the bathroom and shower independently, brush his teeth, put himself to bed if required. To categorise him as disabled feels strange, if I am honest.

No I think it is people don't understand what a spectrum is - they can only see the word in relation to the 'autism spectrum' despite illustrating this with a completely different spectrum - the light spectrum. So when I say there is a spectrum of behaviour they cannot see beyond autism and take offense

Anyone with the briefest exposure to high school science knows what a spectrum is; but bandying the word about in relation to autism, in a discussion about autism - AKA Autistic Spectrum Disorder - and saying "oh I didn't mean that spectrum is inviting misunderstanding.

That’s interesting. He sounds fantastic and extremely independent for a 7 year old! Did they not consider the social/communication disorder diagnosis instead?

@ROBYN did you just type "get an ASD diagnosis in case your kid decides they're trans instead" ?? What kind of screwed up, utterly transphobic, ignorant and hateful pile of horse manure is that?

Winecrispschocolatecats

That post was worded horribly. Absolutely. But the Cass report identified some issues with autistic girls not being adequately supported and a massive unexplained increase in numbers thinking that way and going to clinics and they haven’t identified why that is. It’s concerning if they’re being misdiagnosed due to their autism not being adequately identified or supported somehow.

If it the criteria were so black and white then why are autistic children not picked up immediately at birth or shortly after?

It can be clear from a very young age. When I look back I can see signs from birth, such as didn't communicate when he wanted a feed, didn't copy sounds or actions as a young baby. But most people don't know what to look for. When I raised concerns about my son's developmental milestones at 18m I was sent to the BBC website to learn how to communicate better. It was only because we pushed that my son was diagnosed at 2. By that point he had many of the criteria they look for. But lots of these were obvious from early days if you know what to look for.

My mum says that I showed no signs whatsoever to cause concern as a baby or toddler (she used her experience with my cousin who is also autistic as a guide). If anything I was ahead in my development. So whilst yes, it can be obvious if infants follow the stereotypical signs of autism like my cousin did, a lot of us - chiefly girls - don't present that way.

If it the criteria were so black and white then why are autistic children not picked up immediately at birth or shortly after?

In my case it probably could have been picked up from near birth. I've been told I was a very difficult baby from a very young age. I barely slept and it was a real struggle to get me to take milk, as in my mother would literally drip milk in to my mouth in the hope that I'd swallow it. I was then what would probably be called precocious, I toilet trained early, didn't like the feel of a nappy on my skin. I spoke early, I read early, etc etc. I have always struggled in social situations from a very young age. But I also have a very high IQ which has helped me mask many of my difficulties.
Of my 6 children, 5 (possibly all 6) are on the spectrum. 1 of them was just over a year when we first got the PDD-NOS (also known at the time as atypical autism) dx and this was over 20years ago. My 12yo got a PDD dx before he was 2, but due to his other difficulties (ADHD/GDD) he only got his ASD dx this year, I've known since before his first birthday that he was autistic.

PDD= Pervasive Developmental Disorder (and IME is generally a precursor to an ASD diagnosis unless it's paired up with something such as Retts)
PDD-NOS = Pervasive Developmental Disorder-Not Otherwise Specified (this used to be interchangeable with Atypical autism or aspergers, it was a way of saying autistic without saying it)

I remember when my now 23yo got the PDD-NOS dx, searching on the rather limited Internet we had back then to find out what it meant.

My DS showed no signs, really, before about the age of 6. I have gone back through his developmental history, I have tons of videos and photos from that time period, and there were really zero signs or indications of autism. It was never mentioned at nursery. It has only really been since he has got older, his social skills seem to have worsened or stopped developing in line with his peers. The only thing I can possibly say may be an indication of autism was being very clever from a young age e.g. knowing numbers to 100 before the age of 2. But I also was/am very intelligent, and I am not autistic.

I got his ASD diagnosis as a knee jerk reaction. School suggested they saw traits of autism, I was probably in a state of shock looking back, and felt like I needed to 'do' something. I'm not sure I would get the diagnosis now, only time will tell if it actually helps or is useful. I would also explore other options, like social communication disorder and ADHD, before automatically jumping to autism. So many of the traits don't fit for my DS, and whenever I hear 'significantly impairs everyday functioning' I really, really cannot relate that to my son.

@AutiMum

So many of the traits don't fit for my DS, and whenever I hear 'significantly impairs everyday functioning' I really, really cannot relate that to my son.

I honestly think that bit depends on so many factors. Currently, I work from home and have no issue functioning whatsoever. However, if you were to make me commute to work every day, my daily functioning would be very much classed as impaired. I would be far more anxious, I would have meltdowns on crowded trains, I would struggle to remember social niceties, panic when I can't remember people's faces etc etc.

It sounds like, right now, your son is in an environment perfectly suited to him and his needs :)

Yes, things can definitely change as your child ages. Mine is now an adult and her needs are so different, as is the way she copes. Primary was not much of an issue but secondary the challenges were far greater and I deeply regret not noticing and getting a diagnosis in her primary years. My DH is autistic so I feel like I should have known and seen and she suffered later on because I didn’t. I would never delay diagnosis knowing what I know now.

@TheBirdintheCave Yes, that's exactly it. I think we are framing diagnosis the wrong way. I think we should be teaching people about their strengths and weaknesses, and helping them from there, rather than an all encompassing label/diagnosis. ASD may describe some of my DS's characteristics, but it doesn't define him, and due to there being so many assumptions and misinformation about ASD, people assume he must have 'x' trait e.g. his school assuming he must struggle with transitions, or meltdowns, or have limited interests, none of which are true for my DS.

I've always struggled with authority and being told what to do, this stretches back to being a child. I'm sure I could probably be diagnosed with some form of PDA if I was at school now. However, I just formed my life around my strengths - my independence and determination. I have a very successful business. I have had periods of employment before, but these have been short-lived, as I have struggled with regimentation and 'criticism' from bosses etc. I think we need to take a more holistic, individualistic approach.

I thought that the signs had to be there from the early developmental period? It sounds quite unusual to me.

Definitely worth keeping it all under review. Fwiw my niece was initially diagnosed with sensory processing disorder but my sister never felt it was right and she’s recently had her diagnosis changed to ADHD.

@Ifyouknowyouknowyouknow DS's psychologist said that being 'abnormally intelligent' e.g. his ability to know numbers to 100, name all the Thomas characters, be speaking in fluent sentences before 2, are all signs from early developmental period. It also says throughout that this is all 'her professional opinion.'

It wouldn't surprise me if his diagnosis got changed to ADHD, I was very sceptical about ASD from the beginning. I also question, if ADHD medication 'solved' his sensory seeking behaviour (hyperactivity) does that mean his ASD diagnosis is no longer applicable?

That's why I would rather look at DS's collective strengths and weaknesses rather than all these diagnosis.