To be convinced this isn't autism

[Confusedmum1511]

My DS is 5 and has always had a limbo of ASD or not. I want out of the system and he has some assessments coming up I want to be confident cancelling.

Bits do fit:

Dislikes change
Routine driven
Sensory issues
Poor imaginative play
Prefers adult company to peer company
Prone to meltdowns which are horrendously violent

But things that don't fit make me think ASD must be ruled otu:

Recognises emotions such as happy, sad, angry so age appropriate (chooses not to care)
Very socialable (overly so)
Does respond to name and conversation initian on his terms
Can confidently do all 4 blank levels so obviously has good inference and perspective abilities (just chooses not to care)

Would I be unreasonable to be satisfied it's not ASD and therefore cancel the appointments?

Utter rubbish that “most children” are diagnosed at age 2 or 3 and that 5 is late for a diagnosis. hmm What about the many many children whose ASD traits show later on than age 2 or 3?

They won't diagnose until aged 7 here. You have to fight for sodden everything.

Have you posted about this before?

I think it does sounds like ASD, possibly PDA possibly ASD and ADHD together which can present similarly. The only way you will get answers is by going through the process. It is slow and frustrating but not doing it will just mean that you don't end up with answers and that will make it hard to get appropriate help and support which, I'm afraid to say, will probably be needed more and more the older he gets.

I really don't know what you hope to gain by not going? Other than in the short term not having the minor inconvenience of attending a few appointments? Getting answers and/or diagnosis is not going to do any harm. Not doing so could do harm and make both your and his lives much harder than they need be. I can't understand why you would want to do that.

Incidentally, my eldest got diagnosed at 12. I had to fight for 4 years to get a referral and wait another 2 before we got the diagnosis. So many people have to fight so hard to get in the system. If you are in and drop out it could take years to get back in when you are desperate.

Utter rubbish that “most children” are diagnosed at age 2 or 3 and that 5 is late for a diagnosis.  What about the many many children whose ASD traits show later on than age 2 or 3?

I find that hard to believe. ASD is a developmental disorder, starting from birth, it could be very well that the traits were already there at a young age- it was just weren't picked up. It's difficult identifying children who have other difficulties going on eg. prematurity, health needs etc some professionals suspect that the child's atypical characteristics are down to this not something that is supposedly neurological. I also find that you have to tell the professionals what to look out for e.g.ASD in order for them to start putting two and two together.

In my LA, the majority of children are diagnosed 3, a few at 2 and children on the ASS pathway will be assessed around 6 months from the federal. I'm sorry, but we do find that 5 is a late diagnosis- especially when the child has not been receiving support before this. By age 5, children already have established foundations skills, most child development acquisitions (barring other things) is somewhat solid by this age group.

That's why at 5 years plus parents begin to see difficulties at school, You find that the child over the age of 5 cannot pay attention in class, social skills are lagging in comparison to their neurotypical peers, reading difficulties become apparent, speech and language development appears disordered or delayed (a child who has a S&L difficulties persisting over age 5 is not a delay- it's a disorder), the child cannot keep up with the curriculum etc.

I'm sorry, but we do find that 5 is a late diagnosis- especially when the child has not been receiving support before this
It is late but DD being my first meeting the main milestones slightly late but no worryingly.
I thought she was an anxious child until she started school in 2013.
I'd no idea as she floated unnoticed in preschool too.
With DS I knew myself something was wrong few weeks after his birth.

Can I ask where in the UK that most are diagnosed at 2? In my LA it would be very unusual to even get a referral before 5.

@whyismysoullost.......My dh wasn't diagnosed until he was over 40 and served we 22 years in the AF as part of his out processing. My 11 yo was diagnosed last month. Thankfully, as soon as he was diagnosed he immediately got what he needed. Within a week he was started on meds (adhd) and assigned a para for 1 on 1 and has a chill out space that he can use during his meltdowns

@whyismysoullost I’m sorry but your experience is not usual. Perhaps you only come across the diagnosed children, and don’t actually meet the many, many undiagnosed ones? Some areas will not even start the diagnostic process until age 6.

Dd diagnosed at 13.

20 or so years ago the average age for young people to get a diagnosis was about 17 - if you were lucky & persisted - dd was 16 & had previously been misdiagnosed with epilepsy - which was not an uncommon thing to happen -she was on medication (that she didn't need) for about 6 years & the side effect was on growth & delayed puberty (& issues with sensitivity to sun) among other things. Op please take this opportunity its to your dc advantage.

Just keep pursuing the diagnoses.

Recognising basic emotions with ASD is a common thing. It's managing these emotions and learning what is masking and what is not. Also being overly sociable is a sign of not understanding social norms and being too familiar.
A diagnoses is not doom and gloom and early intervention is key to helping the child.
I am by no means an expert (but many years of working with infant school children with ASD and lots of expert advice and further training) and I cannot diagnose over the internet but all those reasons (for and against) tell me there are traits of ASD. Please embrace them and use them to your child's advantage.
Intervention and help will allow your child to thrive in their environment and teach them skills they may not instinctively have.

housing London. Though again it's depends on the borough.

Leannb I think it's great that your son is getting the support ! In no way I'm I saying receiving a diagnosis over the age of 5 is doom and gloom and the child won't progress. I used to do some work with adults who had traumatic brain injuries and some of the progress they made, with the right support and therapy, was amazing. The brain is a fantastic organ.

I didn't mean to derail, I just want to highlight to the OP that she should grab the opportunity, for additional assessments of her DS, with both hands. Not all parents are lucky, most have to fight or the professionals don't pick up their DC'a difficulties and therefore years are wasted.

@whyismysoullost if your child has an atypical presentation or other co-morbid diagnosis you are dependent on the attitudes of medical staff & their knowledge/expertise or its lack or the financial issues in your trust which means they either delay or wont put forward a dc for diagnosis. I fought for years & was told that there was no need to label (dr words not mine) my child. I recognised that epilepsy symptoms didn't correlate with my dd issues but you have to remember that a lot of doctors have stereotype attitudes that girls don't get asd, that if they have eye gaze they don't have asd, & anyway its me being difficult overprotective mother who no doubt had Munchausen by Proxy - until I finally got to dd to asd assessment centre & within hours they confirmed her diagnosis - & what did the doctor say? "we (!!!) have learnt something here" (what me? bitter???)

mumwon You are right. That's why I mentioned below that sometimes you have to specify to the professionals that your worried about ASD before they start putting two and two together. I guess it's about following parental instinct despite what the professionals say which is very difficult in itself.

We are quite lucky in my LA, most of our children centres have weekly drop in and chatter groups with speech and language therapists. Most parents use this opportunity to voice their concerns to the SLTs, they keep an eye on the child, referrals are made and hence going onto the ASD pathway is much quicker and the child gets a diagnosis at 2/3 years of age.

All our LA children’s centres have closed. You are in a bubble whyismysoullost

My child has autism and is also overly social - they can be extremely social but just find pitching their interactions very difficult if you see what I mean. M child was also very empathetic, made eye contact , shared pleasure and has a great sense of humour. My child is definitely autistic. Their diagnosis has got them into an appropriate setting for reception and they are flourishing. They absolutely couldn’t have managed mainstream schooling without the support a diagnosis brings. If you pull out now you may really struggle to get a diagnosis later if you need one. The violent behaviour is often due to their needs not being met in terms of them being hugely overwhelmed in situations. My child’s similar episodes decreased massively when he was treated with sensitivity to his autism post Diagnosis.

Millie Some of our children's centres, in my LA have not closed down. Please re-read my statement about the length of diagnosis pathways vary from area to area. Sorry to burst your bubble.

Asd can be from very mild to off the chart. A couple years ago your describing my now 9 year old. I'm glad I carried on with his assessments as it's taking ages but his issues have become clearer over the last year. As they age the difference in class shows more. His fantastic at maths vocally but if you hand him a pencil his hiding under the table. Stick with it you will be glad you did. Either the diagnosis will come and your child gets the support they may later require or the specialists say they are happy with your child and no further input is needed.

Believe me you will really regret cancelling an assessment. Your in the system so use it to get the bottom of whats is going on. You may find you are sitting in 2/3yrs trying to get back into system and that could take years.

Op look up PDA - it may explain some behaviours. I'm not saying it is that, but you may see some overlap between PDA as defined in the PDA books and his behaviour. His behaviour may have its route in the anxiety he feels and how he reacts he does so defensively to demands (obviously oversimplifying PDA). He may not be PDA but may have some PDA tendencies.

There are some closed Facebook groups which are helpful.

Good luck x

I have taught many autistic children. Some show many 'autistic traits' some show few. It's a spectrum. I taught an autistic boy last year who was very sociable and friendly. He definitely recognised emotions but he wasn't able to cope with change at all. ASD diagnosis are like gold dust so you've been very lucky to get one. They may be able to give you advise or help to support your child's development whether they are diagnosed with ASD or not so I feel you would be silly not to go.

@whyismysoullost - Oh But I did suggest asd & believe me I still had a fight & it took longer than you can imagine to get to the assessment centre - we had to see a psychiatrist & mental health social worker first & still insist dd needed a diagnosis - the social worker stated at one point (how I resisted not punching her lights out I will never know!!) " Oh your dd is so lovely I am sure she will find someone to look after her"!!! They didn't talk to her at all -she was sitting beside us- but just directed the conversation at dh & me. Many gps have minimal expertise in asd & than only in profound type. This was in the 90's by the way...

you might be tired of being in the system, but autism isnt uncommon, and if he IS autistic, then you would be doing him a disservice to remove him from the assessment just because youre finding it stressful.
If they have had concerns since he was 2, then you would be wise to listen and get some support here.
I have 3 children with autism, and I have it too, and all of us are sociable on our own terms when we want to be. I think maybe autism isnt what you think it is. I mean that gently. With a diagnosis you will find it much easier to get the right support, and the more that is put in place when young, the better his chances of getting through the education system ok