AIBU to wonder whether an autism diagnosis is always that helpful in milder cases?

DS has Aspergers syndrome, he was able to take his exams in a small room and was able to get interview questions in advance for his apprenticeship. It has been absolutely life changing for him. He absolutely loves his apprenticeship but may never have got it without diagnosis and adjustments made because if it.

Get the diagnosis, while it might not seem much help right now it could have a huge impact in the future.

That book has been hugely criticised as she pontificates about serious conditions such as cancer and autism whilst having zero expertise or qualifications in either .

And just to be clear - no one gets an autism diagnosis just based on a parent's assessment of whether their child's behaviour h
Is 'normal' or not.

“our son didn't like vegetables and was having tantrums every night and hitting his brother. Now I know he is autistic, he might still be doing those things but I know why, so it must be true' doesn't help me. For context, we are looking to make a decision in our family about this.”

So with a diagnosis that details the significant impact his social/ communication, repetitive behaviours/ restricted interests and sensory difficulties alongside anxiety, masking and literal thinking he may have that he can’t help you step back and look at cause and how better you can handle your son. You may have to let vegetables go, what is causing the tantrums and hitting? Is it a struggle to communicate, are his sensory needs being met etc

I know you’re trying to ‘fit’ ASD into a pigeon hole(s) but it’s not like that. My DD16 was diagnosed with ASD a few years ago, what would have been called ‘mild’ or worse still Asperger’s, however, she can’t go to school,
can’t leave the house without noise cancelling headphones, ear buds, gets overwhelmed REALLY quickly and becomes transiently mute when really overwhelmed. So even saying ‘mild’ means an irrelevant as she’s unable to cope with a lot of her surroundings. DS 13 has ADHD and ASD and presents very differently to DD, however the hearing issues, sensory overload are poweerdul for him too, and it’s something that’s been developing over puberty too so it’s ’getting Worse’ and will develop in its own way. DD has an EHCP for college which starts next week, and DS gets support needed at school too (DD was given tutors at home from her school, and online so she could get some GCSEs and she did well, had she stayed at school she would literally have for nothing as she’d never go, or couldn’t cope with the classes and have panic attacks (what happened when her mask slipped when she was 13 … girls mask well until it all gets too much for them) … so it’s extremely complex, hence only a few people allowed to diagnose, thankfully.

You are talking about "working diagnosis". Very common for autism as adaptations can help even if the person is eventually deemed to not be autistic.

OP - what are you actually looking to get out of this? If you don't think your child is autistic, and the school agree (because they won't refer) then why would you bother pursuing an assessment for autism? It's not like it's a fun day out!

If they're not autistic, they won't be diagnosed as autistic on assessment. I do think you seem to be suggesting that children diagnosed who don't meet your own personal criteria of being autistic enough are just badly parented/having tantrums/have parents looking for social treatment. That's not the case and it's really minimizing the impact autism has to view it that way.

If you think your child has autism but are unsure whether to get an assessment, that's an entirely different discussion and it's a perfectly valid discussion to have. But in that case you wouldn't be trying to say that all kids have tantrums (they do) or everyone gets stressed (they do) - obviously if a child is autistic they are demonstrating (to an independent professional) that their behaviour is not what 'all kids' do.

I don't doubt there are people who badly parent and then look for excuses for the outcome, but that's not really got anything to do with an autism diagnosis - it's not like professionals can't tell the difference!

If nobody has mentioned it before I recommend reading The Age of Diagnosis by Suzanne O’Sullivan as she tackles a lot of the very issues you are discussing.

Without proper assessment and diagnosis people could self-diagnose themselves with anything. People can tell you that you are likely autistic, they can share what coping techniques and adjustments would be helpful but without assessing they cannot say you are autistic. That is not to say you become autistic the second you are diagnosed, of course you’ve always been autistic. I’m not trying to argue with you or minimise anything, but we need to acknowledge that there is a diagnostic criteria and it must be assessed against. Whether it needs to be updated and changed to allow for differences between sexes and the ability to mask and mimic and how that can stop diagnosis is a separate issue and I firmly believe it does need overhauling. But it is really important that specialists diagnose and not SENCOs, counsellors or others without the training and knowledge to look at differential diagnosis, co-morbid conditions and other considerations.

There is no "mild" autism. It all depends on how well they are managing currently.

Anything can change and cause significant issues that seem to "be out of the blue". Usually when environments change and people experience a lack of ability to change things such as moving to university or starting a new job. All wanted things but they can lead to difficulties.

Autism has never been a catch all for a cluster of behaviours. Where have you got that from?

It’s also a trait of just ‘human interaction’…? Is ‘finding stuff offensive’ also a trait of ASD? What about acute curiosity about people’s family? Honestly the net keeps getting cast wider.

The vast majority of autistic traits are normal parts of the human experience - the difference is that when you're autistic, those traits have a severe and often negative impact on your day to day life.

Think of it like a headache vs a migraine. A headache is something everyone gets but that can generally be dealt with by some ibuprofen and some water. Migraines are a lifelong disorder that often result in you being bedridden and unable to do even basic daily tasks.

Well you can. My dd was classified as autistic before her diagnosis by her NHS team and my son is currently being treated as autistic now and hasn’t got his diagnosis yet. He is autistic now and will be when he gets his diagnosis. I wasn’t diagnosed until I was 55. I was autistic from the day I was born and all the traits I had my entire life were there from birth. It’s not my fault they weren’t picked on and the diagnosis process was ( and still can be) very stereotypical and male focused.

I agree OP.

Many of my family members and friends have received an autism diagnosis recently, none of them would say their autism severely impairs them. A couple were diagnosed over a Zoom call which I find highly dubious, they had not even met the psychiatrist diagnosing them.

Kindly, autistic people are autistic with or without the diagnosis. There were autistic people before the diagnosis was created in the mid 20th century, and there are autistic people in remote communities with no access to diagnosis.

If you think you are autistic and that a diagnosis will benefit your life, you should go for an assessment.

Edited to add: the viewpoint of only those with a formal diagnosis are autistic, would be a classic example of cognitive inflexibility and black and white thinking - which is an autistic trait.

My child found it incredibly distressing every year at primary school when they would mix up the classes and he wouldn’t be with his friends. When I said to school that he sobbed himself to sleep for the first month of every term they shrugged and rolled their eyes, thinking I was making it up. Then after diagnosis when the educational psychologist said to the school that he shouldn’t be separated from his friends as he was likely to find that change incredibly distressing, they actually listened.

Worth it for that alone.

There seems to be a lot of examples of using assessment and diagnosis interchangeably and diagnoses coming from a random range of people from teachers to counsellors.

There is a very specific diagnostic criteria that must be reached in order to confirm an autism diagnosis. There has in the past been a lack of confidence in private adhd and autism diagnosis due to less rigorous assessment and accepting more self reporting than an NHS assessor would do.

I am not diagnosed as neurodivergent and neither are my children. I suspect that I am and my children are also. However, I am not an assessor and therefore not qualified to make that decision. One may suspect or wonder, but unless you’ve got through formal diagnosis you can’t claim to be neurodivergent.

A previous poster described their autistic experience of work, I can 100% relate to this and the physical pain that communication, anxiety, sensory and repetitive behaviours cause me. I know people think I’m weird and always have done, I know (often long after the fact) I’ve misunderstood or got something wrong and I’ll torture myself reliving these things for life. But I’m not autistic, I’ve never had an assessment and not been diagnosed. I just am someone who struggles with these things.

So let me get this straight
You don't think your child is autistic
School doesn't think your child is autistic

But you've started a thread to make a point about other people getting children diagnosed when it could just be normal tantrums in your opinion?

I'm sorry I've even shared anything about my experiences with you.

My ds has severe/ profound autism. As time has gone on and the autism dx has changed this dx matters less and less. It doesn't defined great deal now as so many people with the dx present differently. The autism dx doesn't open doors to support etc as it once did, I suspect because of the volume of people with the dx it isn't cost effective.

I have an elder ds too who doesn't have autism, he's very bright and very sociable etc. If I supspected he had autism i'd look at what he was struggling with and look for a dx around that eg if he had a mental health needs i would look to get that addressed, if he had learning needs I'd look at that. I'd do this purely because I believe this would be more helpful to him.

I mean "presenting discussions in ways that people find offensive" is a trait of being autistic, but it is just one trait.

You also haven't been "diagnosed online", I don't think it's very fair to minimise the diagnosistic process like that.

My guess is this is about a stepchild, hence the talk in the original post about parenting boundaries etc.

I'll bite (all my DC have ASD but have literally nothing in common. One with severe learning difficulties, one much more high functioning but really not functioning at all). Could you please let me know what you think 'mild' autism looks like????

A child having tantrums doesn't make them autistic. All children have tantrums, I've seen adults throw a tantrum. That's not autism, it's a child who is either stressed over something or mad they aren't getting their own way.
I'm still struggling to see what the point of your thread is. You briefly mention your own child. Do you think they're autistic but school don't (you said school won't make a referral). If the only reason you have for thinking she/he is autistic is that they has tantrums at home then they probably aren't autistic so views from parents whose children actually are autistic aren't relevant. You can't compare a situation of a child having a tantrum with a child who is autistic, even of you want to dress it up as 'mild autism'.

My kids at ages 11 and 15 were both later getting diagnosed. Understanding the reasons for their behaviour is really helpful. You'd probably describe them both as mild, but they need support that others may not need and they both struggle with a lot of things (they are both bright and don't cause issues at school so they were under the radar for a long time)