AIBU to think the NHS may not recognise my childs potential ASD profile?

[13MAPARTHELL]

I am really worried it will be super difficult as with the Q’s they are very generic and typical autism traits but my child is very complex against these, and he does mask in school.

The main points / behaviours

Social difficulties include not understanding expected behaviours, appearing rude, or responding inappropriately to social cues.

High verbal reasoning; understands social hierarchies intellectually

.Dysregulation & violent tendencies

Defiance and calculated aggressions

OCD traits

Reward-based aggressions (euphoria)

He is a really conflicting, and complex in his behaviours and its really heartbreaking to witness hes clear internal struggles, I just want the best help for him, is private the way to go?

They will assess him thoroughly against a diagnostic criteria, which should be the same for both nhs and private. He may not meet the diagnostic criteria and they may diagnose something else or offer support.

Why do you think your child is ASD?

Private / NHS the assessments should be standardised / same

look up the past and present behaviour schedule

that is one of the key tools they use

For some of the reasons Ive just stated? And my own research & medical professionals advice, early help etc, i dont think he fits the standard profiles tbh, and im not sure where else to turn

The questionnaires are intended to pick up a range of conditions which may share similarities in presentation. For example, the odd/out of sync responses could arise from dyspraxia, ADHD, developmental delay, ASD, past trauma, and attachment disorder. That's why they have to be so thorough in the assessment process to unpick the symptoms and behaviours, then assess the root cause.

Trust the process. I was told that DD2 wasn't autistic for years. When I finally convinced CAMHS to assess, we went to the initial appointment and the man spoke to me for a while as DD2 ignored him. He said it was clear to him that she had ASD so although there were meant to be three appointments before a child was agreed for full assessment, he was just going to do the paperwork.

Also, it can be the little things that our children give away that make it clear. DD2 said the word 'ambushed' 3 times when describing the story book. It made sense, but you had to think about it - it wasn't a natural word to use with the story. She also said she would live with her husky dogs because they didn't have a big list of demands like humans.

DD1 barked 'You're late, I don't like waiting!' at her assessors as they ambled into the waiting area of the library with a Costa coffee.

The assessors see hundreds of people with all sorts of presentations. They have a radar for it.

We have a diagnosis and it was very thorough and they picked up on things I hadn't even really considered. I think most people wouldn't think DC was autistic unless they knew a lot about it. However I don't think focusing on the diagnosis is so important (obviously still follow the process and see what they find) but thinking about the support you and he need. We have a diagnosis and nothing else really. Do you need anything put in place in school or is it parenting strategies for home? How old is your DC?

Mine hides in boxes growling, and then screams in their face, or stares at the ceiling and goes stiff, its really sad. He’s really extremely anxious, yet extremely anti-social & argumentative. Its really tough, if we bump into someone, like today and he struggled to get his arm in jumper, they said ‘i can help you’ he says dont touch me, dont talk to my mum or me I dont like you, it makes me scared actually, whenever I see someone who wants to speak to him I think omg pleaseeeee dont

Thank you, hes 4 - we are with early help, early stages currently & they firstly said they cant accept him, until I tearfully begged down the phone to just come to us and meet him. I understand what you mean, I think I am really struggling to understand him & how to respond, I feel a diagnosis will really help me to understand the root of why, sometimes I second guess and think maybe hes just a really difficult child, but hes no nuanced and already at this young age, people including family are stepping away from him, I dont want those to be hes first memories & ultimately we dont feel equipped right now in understanding him, when to punish, to punish at all or how to. We have another child, same age to consider who struggles with the situation. The behaviours are driving me and dad insane, its so fucking hard to without the diagnosis for us

My school and GP told me I wouldn’t get a diagnosis.

Thankfully they aren’t qualified to diagnose and the panel of experts who did the assessment agreed unanimously.

NHS and Private assessments are the same thing, sometimes even with the same psychiatrist, the only difference is private won’t take years of waiting.

Thank you, my research and early help indicates he has ODD, I know this is more so linked to ADHD, he is extremely impulsive, but I think I may have to wait a few more years for that one!

At this age, NHS may assess him more thoroughly than a private virtual assessment, where they usually rely on ADOS. You clearly need help and should get him assessed. Your initial post suggests typical ASD traits but your last post less so - although high anxiety goes hand in hand with ASD. I would call your local CAMHS and find out what the waiting lists are like. If long, ask your GP to refer through right to choose and trust the process. We have one child diagnosed through NHS, the other privately through right to choose. The R2C report was significantly more thorough and helpful, however both are just starting points to then go forward and determine what else is going on; the anxiety needs to be separately addressed and your GP is the starting point for this.

Stick with the waiting list if you're already on it. Does sound like possible ODD or PDA issues within a valid autism concern. I say this as an autistic adhd adult with AuDHD kids, one of which theres a query of PDA with.

Just because you think he doesn't present typically doesn't mean there isnt something obviously going on. And thankfully we are slowly learning there isnt a typical presentation, only a harmful stereotype. Its a spectrum :)

Good luck.

Thank you this is really helpful!

The assessment is quite thorough and should pick up autism if it is there. Your difficulty may lie in getting the referral in the first place. It was like that with my eldest. I had to fight for the referral and it took years, but on assessment they were unequivocally autistic.

I would try the NHS route. If you can go that way it can make some things easier. But if you can afford private have it as a back up plan.

I'd just be careful about thinking of ODD. It's a thing, of course it is, but you have a very scared little boy who is trying to control his environment. He's probably just learned that people listen more when he's being loud and scary and rude, and that they do what he wants. I'm not suggesting for one minute that you're pandering to him, but if someone tries to help and a child makes themselves as quiet and small as possible, that is a sign to the adult that they can carry on, and the child is just shy. If a child makes lots of noise and sounds very angry, the adult backs off. It's functional - it's achieving the space he needs.

When DD2 was younger, I'd actively shield her from well meaning conversation. We went to a wedding when she was just turning 11. We had to do a pre wedding afternoon tea. I literally said 'This is DD2, she doesn't like being talked to. Please just ignore her and she will warm to you as she's ready'. Then I scuttled her past their well-meaning smiles to a corner seat so that she didn't have to sit next to anyone new.

We have to advocate for our children so they don't have to use their own methods to feel safe.

Oh, another anecdote - DD3 was assessed by Teams. I worried that they wouldn't 'see' her. She's a very academic, very friendly child. They not only saw her ASD but at the end of their report they added 'We recommend that DD3 is referred for an ADHD assessment based on our observations'. So they had seen her fidgeting, distractibility and impulsivity, even over Teams.

Extremely helpful thank you so much, such a great way to frame this - as a mum who works full time and has two around the same age, and no respite whatsoever, I really struggle with finding the time and mental energy to basically sit and gain mental clarity - i have adhd, diagnosed as a child, and so I struggle with impulse, its such a journey for us all, but you explained this so well x

have you had an assessment on the NHS? If so what was the outcome. Not clear from your posts where on the assessment journey you are. How old is he?

If your child has an ASC it will be picked up during the assessment process as he’ll meet the criteria.

if, as you say, he’s complex with behaviours that don’t meet the diagnostic criteria for an ASC he’ll be diagnosed with something else.

the whole point of assessment to to assess what difficulties are - not to prove or demonstrate certain behaviours to fit a sought after diagnosis.

You’ve listed lots of things here but not given any examples. What does ‘understands social hierarchies intellectually’ look like in your DS? Or ‘dysregulation and violent tendencies’?
What makes you think he ‘masks in school’? Many children behave differently in different situations, as do many adults - I behave very differently at work than at home or out with my friends. One could argue that therefore I’m masking, but I’m not - I’m behaving in a way that’s acceptable for a given situation.
If the NHS don’t think your child has ASD, then why do you believe that paying privately will make a difference?

À diagnosis won't change your DS or wave a magic wand. You need to find what works best for him.

Give some more examples of his actual behaviours as some of what you describe is being 4.

Depending on where you live they may not diagnose ODD/PDA etc on the NHS. We were told we'd just get 'Autism Spectrum Disorder' as the diagnosis, whatever the specifics of the presentation.

OP it might be difficult to get a diagnosis, it might not. It can depend on which professionals are there and how your son behaves at the appointments. But the more important thing is that you are already accessing early help. My son has a very typical autism presentation and was diagnosed rapidly easily (still a long NHS wait thouh). Tbh the diagnosis didn't open any additional doors at all in terms of support and just told us what we already knew.

When he was younger, but they didnt proceed due to lack of nursery evidence / but they did say that they could see behaviours from our meeting.

So basically, he does not see authority, he behaves in a way that he is equal to adults, so is very rude and confrontational - but ALSO can be extremely anxious, in which case he will still be rude. For example, if someone asks me in the street ‘do you know where x is’ or they say to him ‘i like your coat’ he will either freeze and both eyes will stare to the sky and not move or blink OR he will react ‘i dont like you get away from me, dont talk to my mummy, your weird etc’ HE ABSOLUTELY CANNOT be spoken to approached first, even with family.

he has extremely low frustration, puzzles, if something dosent fit, if he doesn’t get what he wants etc he will become very violent, and extreme in his reactions, smash everything, break everything (his room is practically a padded cell)

if a person is visibly upset, crying as he has hurt them, or something else has, he will uncontrollably laugh (manically) hes eyes go very wide, he bounces around etc.

OCD traits with food, every cupboard of every drawer, door in the entire house has a lock or dead bolt, we have got rid of tables and chairs to climb, to get food. He is extremely persistent, he asks upwards of 200 times a day, I have to lock myself away to eat, he will eat food in the supermarket with packaging on. He will also confront people eating in the street, he will also steal from peoples bags, and lock himself in rooms to do so.

He will harm children, and make sure nobody is looking, and asserts power and control in all situations etc, if people he doesnt know are playing football and we walk past, he will actively seek to ruin a part of this for them, interrupt etc

he is extremely paranoid, if we are walking to the park, and a couple walk past laughing with one another he asks why they are laughing at him

inappropriately touching older children, around the bum and obsessively pulling and touching hands and grabbing, pulling hair and trousers down etc

urinating and defecating in places he shouldn’t, he also says ‘im going to do this’ so mummy can I have sweets, I might say, not today sweetheart but maybe tomorrow if we are good, he will say ‘im going to punch you in the face then’ and will 😂 or he will make sure im watching & harm his brother, this gets very serious

these are some of the main behaviours