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?

my middle child was diagnosed at 2 or 3. I raised concerns about him not responding to his name and flapping his hands, and they took it seriously because his brother already had a diagnosis, and did quite an indepth assesment over a period of a couple of months and he got a diagnosis.
I think the early intervention with him was a huge part of why he is coping with school better than my other two did/do

and he is high functioning

Hf and lf are unhelpful terms that professionals avoid using these days. I have one who would have been classed as hf and one who would have been termed lf although not so typical early on. but they both have pda and the anxiety that comes with that is extremely disabling, every bit as disabling for them both in different ways despite the hf & lf stereotypes. These aren’t helpful terms.

Op my kids had less than your pro asc list, yet both are very clear cut cases of kids with asc (and pda and adhd).

Autism is so very different. But a diagnosis doesn't change whether someone is autistic or not. My son is very, very able so he is able to infer emotions and other similar things on a superficial level. When assessed, his language was in the 99th centile in all areas other than his inference, which was 30th centile. But, he was able to counteract this with strengths in other areas.

I was diagnosed at 28. I was married, two children, full time job, degree educated. Autism is not linear. I wish, so much, that I'd known earlier. As does my mum.

Ds is 15 and was diagnosed in September. I really wish we had pursued a diagnosis earlier. Late diagnosis for him has meant mental health issues that we are now trying to get support for.

In hindsight there would have been evidence to diagnosis him at 5. We just didn't understand autism enough and his significant communication and interaction difficulties were ignored at school.

I would go for assessment, they won't diagnose unless the person meets the criteria but much better to get an earlier diagnosis if autism is a possibility.

This thread has been invaluable and enlightening, Thank you.

What is to be gained if you cancel the appointments? If he doesn’t have it then he won’t be diagnosed with it, nothing else to it

Emerald I hate using the terms: High functioning or low functioning.A diagnosis at 2 or 3 years of age does not predict whether a child is high or low functioning... hence a child who is non verbal does not suggest that they are "low functioning".

"High functioning" children- as you put, do can receive a diagnosis at 2 or three years of age. However, this requires the professional to really examine the child's behaviours, asses non verbal communication, play etc. These children are sometimes missed, especially girls, though this is slowly getting better, if a child has adequate speech and language skills, their overriding difficulties can be missed too.

Ds is empathetic and imaginative; he has an autism diagnosis from the age of seven.

Sorry for using HFA and LFA of a spectrum. I wasn't aware it was not used any more.

I'm glad you have found all the replies helpful and enlightening.
I agree with virtually everyone that you would be making a huge mistake to stop / withdraw from the assessments at this stage.
If he isn't autistic, then that is what the assessments will find, but there is nothing in your list in the OP, that rules out a person having autism.
If concerns were raised as young as two, that seems to indicate it is more than likely there is something there.

In a SEN school, kids use ways of differentiating between people. My eldest used to say that some kids were "severe" and that he was more like aspergers. Im not sure the point of pulling people up when they use functioning levels and reducing their language to describe themselves.
people who are high functioning can have significant difficulties, but it is not the same as someone with Kanners autism. In many ways it is even harder because of the higher expectations, but the whole thing about getting rid of functioning labels, or aspergers as a diagnosis is controversial in the autism community and there isnt a consensus

From someone who has two children on the spectrum, I would not be cancelling. My two children are polar opposites.

My youngest sounds like what you have described. He is actually now in a specialist provision school and sound amazing.

ASD isn’t a one size fits all. For the sake of your son, consider having the assessment. You have nothing to lose.

Why are you so “anti” him being formally diagnosed or labelled?

You've had so much good advice op, but I just wanted to add that I am a teacher and see nothing in your initial post that rules out autism.

Please don't cancel the assessments. I'm sure you are frustrated that the process is creaking along at a glacial slowness but at least you are in the system. If you cancel now then you will be back to square one. Let the right people assess him and make a diagnosis, or rule it out. It is not something that you can or should do yourself.

With a diagnosis, whether it is autism or not, you will also find it easier to access and receive the help and support that he needs at school.

DS2 has just been diagnosed at 5yo - he’s very social, overly so and really doesn’t understand boundaries or the difference between friend or stranger. He understands what different emotions are and can understand them in himself but cannot relate them to how others may be feeling. He can be a lot of fun to be around, but his meltdowns are violent. Conversation is very much on his terms and often one sided, he can make eye contact, although there are times he will actively avoid it.

I can kind of see where you were coming from - while we were going through the assessment process I was worrying that he wouldn’t get an asd diagnosis, and we’d be left with “he has behavioural issues and it’s all your fault”. Probably because of how people made me feel prior to his diagnosis. We’d be out in public and getting tuts and stares when he went into meltdown.
I’ve had strangers and family tell me he needs discipline and I’m too soft. Now he has a diagnosis I understand where his behaviour comes from, have told certain family members to get stuffed with their ill informed opinions in his behaviour and the public I ignore since it’s none of their damn business. His diagnosis has helped us as a family, as well as him accessing support at school. We’re happier, and now we understand him better we take things at his pace, and react better to situations he struggles with.

FWIW, I find it odd that people get so bent out of shape with labelling/not labelling their kids (not saying you are op, just experiences I’ve had with others). DS was already labelled as disruptive, naughty, etc. He now has a far more accurate label, and he’s still the same kid he was before diagnosis, just a happier more well adjusted one now we understand him better. Good luck with it all op, I hope you can get the support you need.

Please do the assessments.

My child does not seem autistic, he has advanced communication skills and is very sociable. He has no learning difficulties or 'special interests' and not only understands emotions but is overly emotional himself. Imaginative play has always been fantastic! He's currently jumping around in a Harry Potter costume making up spells.

I'm just trying to say your list of exclusions why your child is not autistic does not actually exclude autism. It has such a varied presentation.

I understand it's frightening. My son has been diagnosed for three years and I still feel afraid at how he will develop.

Please just do the assessments. They will not diagnose someone who is not autistic. They might consider other diagnoses after going through all the processes.

If your child is autistic they need to know. I have worked with adults who didn't know they were autistic until adulthood and may have had a mental health crisis along the way.
If they had known they could have accessed support at school/work/home and been proud of themselves, not wondered why they were different and been self critical instead.

My 21 year old son has a diagnosis of autism ( high functioning ) and dyspraxia , as people have said it is a spectrum so there is not a one size fits all list of characteristics . What I will say is that when he was first diagnosed at the age of six , the new world it presented to us felt very scary . But now 15 years down the line it could not be a more different story , he is a bright intelligent well adjusted young man in full time employment . This is not just due to his inner determination to push his boundaries ( which he does every day just to get through the day ) , but to the countless professionals who have helped him and us along the way . The benefit of his diagnosis has allowed us to reasearch and fight for the things he needed to be able to educate and help him better deal with both these challenging conditions , learn invaluable coping strategies to help him navigate a slightly easier path through his life.It's not been an easy journey at all , but I'd do it all over again if I had to.
Remember at the end of the day if a diagnosis is given , it's not us as parents who have to learn to deal with living with an additional need it's our child , and our job as a parent is to help them to the best of our ability . To me knowledge is power , I appreciate that it's a scary concept and it's tough to hear that your child is different , but having it confirmed can give you the power to put things in place now which can make a huge difference to their future.

Sorry that should read It's not been an easy journey !

I was like this before my DS's assessment. I'd pushed for months for the appt but suddenly I convinced myself that I was overreacting, maybe I was a bad mother, maybe I had Munchausen-by-proxy, I was just wasting NHS resources & should let the appt go for someone who really needed it... I also had mixed feelings when they confirmed the diagnosis. My head knew it could be helpful for him but my heart wished they'd said I was a bad mother because he could get over that & not have struggles his whole life.

They also said throughout the process that they might reserve judgement & ask to see him again in a few years because nearly 5 is still quite young & sometimes the symptoms can be normal for younger children depending on their developmental age so they might need to wait and see if he grows out of them. Everyone on our post-diagnonsis support course had children with much more severe difficulties. My niece was 8 or 9 when she got her diagnosis & that was considered "average" so I don't think 5 is particularly old!

Despite all that, I'm putting off getting my other DS assessed. He's a very different character so I'm sure autism can't possibly be the reason he has huge meltdowns & hits us because we ask him to do something simple like put his socks on, drink something or stop building Lego so we can go out somewhere that he wants to go. Nope, definitely not autism/PDA - we're just dreadful parents who can't control their child...

Just received his latest peads report. I definitely need to pursue this as hard as it is

Cancelling the assessment they clearly have assessed already that he needs is crazy!

why on earth would you throw away all the help, support and guidance you can get by going through this now rather than when he starts really failing/struggling/in trouble?