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?

I think you really need to wait and see how the assessment goes. Assessors are highly trained. I also think you need to be a bit more open in wanting to have an assessment and answers. You seem to just want a diagnosis. All my children are diagnosed with ASD. One is very complex and we had to go through a second opinion. One thing I was always clear about is getting them assessed to get answer as to what is going. I think you need to be more open. You made your mind up it's ASD but there are a lot of other things which might cause his behaviours.

I actually dont think its ASD, or I am not entirely sure, me and early help believe it to be a profile of ASD which is not widely as recognised etc, and here is where my concern lies - I want to get the diagnosis so that I can come to terms with it, currently I do not know if he has anything, or how to parent him and these behaviours, its extremely difficult to accept and have mental clarity when I do not get a moment to think etc, 3 medical professionals although not in this area, have mentioned PDA or ODD without me bringing it up, and so I am just nervous that I hear some do not recognise or profile when assessing, but this post has made me understand otherwise which is great and exactly why I posted

The private assessors should also be NHS assessors for their day job.

Private doctors in paediatrics rarely just do private work.

so stop worrying about that. A reason to go private is to get an assessment earlier rather than later. Not because the assessors are more capable of assessing complex cases.

there are a lot of requirements to meet the diagnosing definition for neuro developmental conditions. And the patient will exhibit different behaviours in different environments AND these may change over the course of their life. Hence some may be assessed several times during their life before being diagnosed.

however. Schools should deal with the child in front of them. Therefore a diagnosis shouldn’t be the holy grail. I know some areas and even some schools struggle with this. Luckily our current schools didn’t require a diagnosis to deal with our child appropriately.

we have ND children. One of whom was described by a paediatrician as having a typical female ASD profile. I had originally assumed ADHD like her sibling.

however when we had an in depth private review with a psychiatrist he “saw” only adhd in the room. And I saw what he saw and agreed!! Following the meeting we completed a questionnaire and so did school. At which point the psychiatrist agreed that both adhd and autism were present.

the diagnosis has given us access to adhd medication but has not changed how school deal with either of them.

At home it has given us permission to be kinder to one another. And more accepting. And to articulate challenges and strengths and so to appreciate each other more openly i guess.

ODD is an element of most ND profiles. Especially adhd. It is rarely separately diagnosed and could be caused by frustration resulting from underlying undiagnosed dyslexia or deafness or hyper mobility etc

so try not to jump to conclusions or to assume a professional will not uncover what is going on. Yes there are bad professionals but some of them will also be working privately!!!

Good luck. I hope you and your child get what they need.

Hes too young, hes really little.
my mother has narcissistic personality disorder
perhaps hes just extremely unregulated, they have never mentioned anything other than autism, im terrified because as you say it doesn’t really fit, there is a strong intent and as far we can tell he does understand, sometimes if hes hurting someone or upsetting them and we say stop they are crying he still wont it will take physical removal, but hes not always angry he could do this calmly or excitedly, and it is extremely concerning

a professional mentioned ADHD due to these impulsive reactions etc, but he dosnt really fit this mould either

Where are you on the NHS waiting list? Private will be quicker but no less thorough.

PDA is a specific ND profile commonly considered to be an ASD profile. However. Different theories exist about it and in the U.K. it is not commonly diagnosed separately to ASD.

what I would say, based on my own experience as a mother and sharing knowledge with other similar mothers, is that PDA children need to be parented differently to other ASD children.
personally i saw a lot of PDA type behaviour in both my kids but it just isn’t as extreme as my friend’s child who is diagnosed PDA with ASD. However in all cases, their need to control diminished when they were in the right school environment.

2 out of these 3 kids is now in a private school with much smaller classes and extra support when needed.

the 3rd is in an excellent state school
which is part of a Trust where they have put a lot of effort into teaching styles which support all kids but which work well with ND kids. And the staff have clearly had training to recognise a child who needs extra support and what that might look like.

the right school Is probably more important and more urgent than getting the diagnosis (I say this when my oldest child is now in secondary school and we are 7 years into our ND journey - hindsight would be a marvelous thing!)

That must be really difficult 💐 I think the assessors will have experience of the different ways asd can manifest so will be able to tell whether his problems are because of asd or something else or perhaps a combination of things. I'm not sure private will be any better, I think the reason people usually go private is due to waiting lists being so long for nhs rather than them being better. Are you able to access any support with his behaviours at the moment?

Laughing at others misfortune is a symptom of being children and commonly reported on here and other forums related to ND kids.

do not jump to a PD conclusion and then down a rabbit hole for a small child.

see the professionals. Get the right support.

He's four years old. He barely has a personality, let alone a personality disorder. The common rule of thumb is that a child with ASD has an emotional development of ½-⅔ of their same chronological aged peers. Many, many 2 year olds laugh at outbursts of emotion.

This whole thing needs to be dialled back. Look at the child, not the label, or potential label.

@13MAPARTHELL DD1 has ASD, probable ADHD (not yet assessed) and a brain malformation, which nobody can agree the significance of. She also has Learning Disability, which nobody can agree the severity of. She's 19. At the age of 3-4 and upwards, DD1 would deliberately hurt one of her siblings, then as I tried to comfort them, she would deliberately hurt the other. Was she mean? No!! She was loving the game. I hurt her, then Mummy tries to stop me, then I go to the other one. Cause and effect - lots of attention (positive or negative makes no difference) and a nice little chase.

I spent a lot of time banging on Social Services door. Eventually, they assessed and said she was a happy child. The second assessment, after I complained about the first one, DD1 stood on my lap, slapping my face throughout the assessment. I turned to the SW and said "Do not write that she's a happy child. Tell the truth. I've seen your assessment criteria - I'll tell you I hit her if it gets us the support we need." That assessment got me 4 hours per week of support worker time. Plus, HomeStart provided a volunteer for 2 hours per week. So 3 evenings per week I had support in the afternoon so that I could give my two other children attention without them being hurt.

The diagnostic process is long. DD1 wasn't assessed for ASD until she was 15, even though her paediatrician had a special interest in ASD. The fact that she had a brain malformation, plus global developmental delay, which became LD, plus epilepsy (now in remission) made a really murky picture. We're only now pursuing ADHD assessment because the limited attention span is the thing that hampers her progress most now.

Don't worry about diagnosis. It achieves very little because there's no support after. Focus on what needs to change and how it could be changed.

How do school/nursery cope? How is he there?

This is just a complete load of rubbish, this is just a little 4 year old child not a teenager.

OP my ds went through a delightful stage of loving slapstick when he was slightly older than your son, unfortunately as part of this he loved tripping other kids over and watching them go flying. Thought it was brilliant! Obviously I was mortified. I caught him 3 times over a period of a couple of years and I'm sure there would have been more times when i wasn't there. He couldn't think of the possible consequences of what he was doing or empathise with the kids he was doing it to.

He also knew he was very clever and had no problem boasting about it, he couldn't understand why other kids might not get things as quickly as he did. Doesn't he sound a delight? But still he's now a young adult working as a software engineer and studying for a degree, fitting in well and enjoying it all.

Pre-empting people wanting to speak to him is a great idea as suggested by pp, but you can't do that forever. I would alongside that discuss with him and encourage him in socially acceptable ways to get people to back off ie 'No thank you'. There's obviously loads of ways you can practice this at home yourselves and he can see how it can give him control over situations.

If situations arise where he could say it then just remind him like a stuck record like you would with a toddler - if he's rude and 'I think you mean no thank you ds' is going to be too anxiety provoking for him then perhaps 'oh that's a really good time that you could say 'no thankyou' ds and then I'd know you don't want to.' Of course if it catches on do not expect him to realise that 'no thankyou' won't get him out of things he really has to do! Also expect it to take time for him to get it and start to trust in it. See if he'll practice it with you with you asking silly questions like 'do you want seaweed for tea' - it's hard to know how receptive he is to learning social skills like this or if bringing in humour works with him.

To me everything you say fits with ASD, I'm not really sure why you think it doesn't? This is a kid that clearly has absolutely no idea about social rules, what's socially acceptable, his own emotions, others emotions, despite being a very bright child in other ways - it is all completely typical. He needs so much teaching of very, very simple basic social and emotional skills, the sort of thing that is completely obvious or even kind of innate in other kids. He won't have a clue, I was amazed at the things ds didn't realise that were so blindingly obvious to me that i didn't think anyone would need explaining.

Your ds needs every little thing explained to him when it comes to these things - he probably doesn't have a concept of 'sadness' or recognise when he's feeling happy. He can't understand what someone else is feeling when they are upset or angry, he won't even recognise those things. Explain to him what he is feeling as he is feeling it and why - oh I can see you're feeling really happy because x happened. Also try using his past experiences to help him understand others, 'remember when you fell over and hurt your knee and you were very upset, well now x has hurt her arm and is feeling like you did then.' He may still be a bit young to really get it, but it just starts the process of understanding and learning about emotions and empathy.

All this really needs a lot of time, effort and input though OP and that is going to be tough if you're also working full time. I don't suppose there's anyway you could reduce your hours or go part time? I was a SAHM when DS was little and tbh I think it made a huge difference to him feeling safe and secure, having a lot of 1 to 1 time, a lot of opportunity to just decompress and not have to be around other people constantly and for me to work with him the skills that he struggled with. How does he manage at school/nursery? Is he masking there and seems absolutely fine? Please don't think that will prevent him getting a diagnosis if so, ds was perfect at school.

I also dont think this is either just asd or adhd. It could possibly be both which can have some impulsive behaviours etc. Possibly is ODD.
I would say - doesnt understand hierarchy appriopriately.
Violent
Enjoying causing upset

Is he reactng like that to other people to get you to stop talking to them?
Or is he genuinely worried?

Kids who have pda are often like that with all demands so not just a few.

My youngest is similar about food - constantly hungry i think its an adhd thing.
Its pretty extreme that hes eating the packaging at supermarket etc. Though at 4 mine was so hungry she would do one activity and snack at the zoo so say snakes then want another snack at the next and the next!

Fundamentally your dc doesnt see you as being in charge (hierarchy) so he is hitting you, eating things you say not to. Does he hit at nursery teachers?
My eldest doesnt believe in hierarchy and that includes teachers and HT too.
Things with poop etc tend to be asd but sounds like his ontent is to annoy you?

Does he have
Asd-
Communication issues
Sensory issues
Issues following instructions
Friendship issues - party invites?
Anxiety
Late to talk
Late to potty train
Trouble sleeping?

Adhd
Impulsive when not trying to annoy people?
How is he at clubs like swimming lessons

Is he better or ok 1-2-1 with a parent?

Is it actually ocd that you mean or repepetitive behaviours?

I think you should try and see if you can get him assessed whether that is on the NHS (long waiting list) or private. If he's not, then fine . If he is , then also fine but you can read up on and get guidance . Don't listen to people who say you are just being whatever (like people said to me about my son) . You shouldn't wait. I had to wait until I was 50 to know what was going with me and my mum knew something was going on since I was a wee girl. Good luck .

You are sensible to think about this before you get an assessment @13MAPARTHELL

If you want it accepted by the NHS, then make sure it is multidisciplinary, done by a consultant psychiatrist who is on the specialist register, has (or has had in the past) a substantive NHS post, and works with a psychologist. Look at their GMC register entry. Expect to pay upwards of £2000, more in London.

If done properly by reputable staff then it has to be accepted. There are some dodgy private companies out there who use unqualified staff to assess.

Hi OP, just wondering if you'd seen any progress with getting help with your DS? I ask as I see a fair bit of overlap with my DD (4.5) with some of the things you describe, not the constant eating, but the dysregulation, v.low frustration tolerance, aversion to strangers/adults, as well as fairly extreme sensory issues & difficulty with change/transition what feels like beyond the norm..I wanted to comment as after initial contact with our HV, we've just filled in the ages & stages questions for 48 & 54m, did you do this? It specifically mentions taking pleasure in hurting others and issues around eating, so it's clearly on the list - unsure here if anything bigger going on as obviously so young still. But as she's going naked for days on end & school starts in Sep, getting a bit concerned..!