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?

Please please have him assessed. I have very personal (not me) experience of a very late autism diagnosis and it was so so harmful to the person.

All children are still developing. However, from birth to five years, child development is already quite established. Cognitive development, theory of mind, play and amongst others things are still developing beyond age 5. However, a diagnosis of ASD at 5 plus, is considered late as the child would have missed the critical period for early intervention.

I am aware that every borough or county is different.

Don't cancel anything. I have a diagnosis of 'ADHD with Autistic Feaures.' People say it's not possible to be 'a little bit autistic,' but of course it is. He could have traits rather than the whole syndrome, but the traits could still be significantly impairing. If he gets diagnosed with autistic traits/features, he could still be able to access some support that might help him, so it's worth doing- unless you don't want him to get help he might benefit from. :)

It's also a myth that someone can't be both an extrovert/emotional etc and have ASD, so they might decide, as experts, that he does meet all the criteria, anyway.

I have 2 with ASD and this sounds like my high functioning child.

YABU. DD almost 5 checks exactly the same boxes as your DS. We're fighting tooth and nail to get past the gatekeepers to be where you are.

ASD is not a one-size-fits-all thing. And I've seen DCs of friends stay undiagnosed into their teens with disastrous consequences because they haven't received the support they need.

I am exhausted, DH is exhausted, our friends are exhausted. But if we can get our children the support they need then it's worth every minute of it imo.

Your DS feels safe with you, which is why he can be himself. Prove him right.

My best friend, whose DS is autistic, sent me this, which I think is really helpful.

We all know that it's a 'spectrum', but most people don't really understand what a 'spectrum' is, thinking of it more - incorrectly - as a gradient. As in, you're more or less autistic, which isn't correct - as everyone presents differently.

The rainbow analogy works really well, I think.

Red and blue are both on the colour spectrum, for example, but red isn't (can't be) more blue than blue.

theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

With assessments etc he will be able to access extra support at school if required. If he has violent outbursts there without a ‘reason’ he may end up expelled or having assessments anyway.

I really with I'd been able to access the Social Skills training etc as a child, when instead I was diagnosed at 40. It could've changed the course of my whole life.

Whatever particular help he needs, they might be able to tailor to him. Please try everything you can.

Of course your son doesn't hate you or enjoy hurting you (I know why you feel that way though - my DD is like that at times). A book I saw on here called 'The Explosive Child' and another one called '10 days to a less defiant child' have really helped us understand why she acts as she does.

In the meantime I think you should take any expert help you can get and stop being so hard on yourself.

OP, my autistic son (5) recognises emotions, is social and some of the things you describe - but is still definitely autistic. Am not saying this to label your child or diagnose by social media - just to point out that the spectrum is very diverse. So it really is best to get the professional opinion.

Fully appreciate what you are saying about being exhausted by the system - totally get it. It's horrendous on the parents. But imagine for a sec that your dc IS on the spectrum, and perhaps starts to struggle as they go through school, you won't get diddly squat in terms of funded support if there isn't a clear diagnosis. So if there's any doubt at all, I would keep them in the system until you get a clear yes or no either way.

Thinking of you - it's tough. But I actually found it easier once I knew for certain, even though the diagnosis didn't go our way.

*wish.

I've ended up unable to work and can barely keep one or two friendships at a time. I have cripplingly low self esteem, suicidal ideation at times, depression and anxiety and the list goes on. Is that what you want for him?

I think you would be very foolish to opt out. The list you have given does indicate ASD ime. Some children with ASD can name and recognise emotions and can sometimes be sociable with peers. Not everyone on the spectrum is the same.

I have a child with ASD... so all very personal experience regarding your rule out points:

Recognises emotions such as happy, sad, angry so age appropriate (chooses not to care) my NT child would care - my DD with ASD would not (but recognise).

Very socialable (overly so)
One criteria of ASD is having difficulties with social interaction. Being overly sociable means, your child has difficulties with social communication. Many with ASD come across as rather introvert/shy etc. but sometimes, it goes the other way. DD is the same. Overly sociable. It has been mentioned in her report.
Does respond to name and conversation initian on his terms you are saying it - on HIS terms. very ASD.
Can confidently do all 4 blank levels so obviously has good inference and perspective abilities (just chooses not to care) no idea what that means

Just see what the assessments bring. Your DS will still be the same child.

Carry on with the assessments - even if your DS doesn't have ASD (which tbh it sounds like he does, even from your second list) he clearly has other SEN.

Maybe you need to change how you think about the assessment.

It shouldn't be the case that they decide that either he has ASD or he is NT. He clearly has some neurodevelopmental differences and they are definitely having a significant impact on his ability to function. Whether those difficulties fit with a diagnosis of ASD or not, he needs them to be recognised, recorded and recommendations made for how best he can be supported.

Children with ASD don't have a label FGS! They are people, not luggage or products.They have a diagnosis which can help the people who are aware of it to provide them with appropriate support.

Go to the assessment and ask lots of questions. Express your fears (without your DS in the room if possible) and keep asking until you feel listened to and reassured.

Your DS doesn't hate you. Children with ASD often express their distress by lashing out at the person they feel safest with. It's just about the most backhanded compliment you can get.

Experiencing your child being diagnosed with ASD is hard. Find a support group, either online or face to face. Sharing those experiences can really help.

Stick with it. The more conversations you have with these professionals, the better you will understand him and know how to help him.

I was talking to DS 1-1 yesterday and it came up in the conversation how Ds was always the first to get up and get tissues for someone who is crying in class, or to congratulate someone who gets something right. He struggles massively with his own emotions but when it comes to other people he is very empathetic and tries to help (even if not always the most appropriate help!)

If you have a chance of assessment go as you don't know if/when you will get another chance. My oldest was well into secondary school by the time he was diagnosed as his autism is quite atypical. But as an adult he's quite seriously limited by it and it's awful.

“It's that I think he won't receive an ASD diagnosis and then my 5 year old who bites me and laughs or is horrendously violent in a shop for no reason is doing it just because I haven't taught him right from wrong”

do you think it’s because you haven’t taught him?...

You do know most parents don’t have to teach their children not to bite them or be violent, right?... they’re just not doing those things, because they just don’t, not because they’re parented better.

If, they don’t see autism while assessing, no, they’ll not diagnose him with that, but they’ll refer him on to whatever service they think he would fit the diagnosis for.

If (and I doubt it is or you’d not be looking for help to start with) it was your parenting that was the issue, there are services that could support with that too.

Whatever the outcome is, you’ll have access to more support with his behaviour than you have now.

You've just described my son in your opening post. He was diagnosed with autism at 8 years.

I too had doubts, but as he's grown his differences are subtle but identifiable and interfere with his functioning. He is now an adult.

Luckily we had a good diagnostic core team. He was assessed thoroughly for about 12 months.

He still loves to play with language and it's idiosyncrasies.

He is the one who always needs a hug and asks me if I'm ok. There are glaring gaps in other social interaction but he's keen and appears sociable

You don't have to conform to all autistic characteristics to get a diagnosis. You do have to display three (Thinking back decades) key characteristics.

People who are autistic are all different, and have different abilities and disadvantages.

The saying goes 'if you know one person with autism, you know one person with autism'.

Autism is a huge spectrum. There are common misconceptions too. Not every child or adult with present the same way.

My son has autism. In many ways he doesn’t fit the bill. He’s always slept well, he makes short bursts of eye contact, he responds to his name usually, he is VERY sociable (often over friendly). He is also extremely affectionate. But he has big sensory issues, no sense of danger, communication difficulties (despite being sociable he is speech delayed), learning difficulties, needs routine and dislikes change. He also gets upset easily and meltdowns have become less frequent but they still happen. Hope this helps 😀

My son was very autistic at 3, didn't speak, wanted to be a clock and was extremely hard to get off obsessions. He's 7 now and has levelled out so much. He has a diagnosis, but would come across as vee bright and shy rather than overtly autistic.

So it can get better. We worked alot of. Empathy skills and his temper is improving with firm boundaries and constant explanations. So, your son could be midly but he can also improve... I really wish somebody had told me that it can get easier as they grow. But I would still pursue the diagnosis if you feel you need to.

People doing assessment are working in this field every working day, whole day, they studied it for years. Why not to take advantage of their knowledge, their expertise?

The diagnosis or lack of it will not in itself change your child.

It might enable you to access services that support as needed.

My DS1 was diagnoed at about 3 and we were very wary of it. My DH told the ed psych 'I don't want him labelled'. The ed psych said if he has a diagnosis or not he will still be labelled in some way as he was so out of step with others. Why put our heads in the sand? Why not use it to empower ourselves?

That worked for me.

Getting the assessments and doing autism related things wont do any harm. Not doing them might. For me it's a no brainer

I mean the following with the utmost respect and huge amounts of sympathy.
It is not your decision to go for assessments, or not. You are an ambassador for your son. He needs answers, you need answers and these type of assessments bring you one step closer to answers. The assessment/diagnosis part is horrendous. The worst. It can take years of your life and will feel like years off your life. If your son is autistic, he is autistic - always has been, always will be. The "label" will unlock the door, it will explain why he is a square peg in a round hole. Things will click into place. You can really get behind the behaviours; understand his world and enter it with a whole new knowledge and understanding. It is worth it's weight in gold.
Your list in your opening message is so glaringly familiar to me - it describes my son who was diagnosed at 7 (having been through the ringer and on the conveyor belt where well-meaning professionals poke and prod and ask and refer) with Aspergers Syndrome (sorry, old school here, still calling it Aspies and not ASD). It was a devastation I cannot put into words. Then the recovery began. I say recovery, because it just is. It fits. You get an explanation and it all falls into place. You get help, you (should ) get support. Do not under-estimate the importance of extra time allocated in exams; scribes; advocates; wonderful professionals who will champion your boy.
My son is 19 today. I have never been prouder. He is actually totally OK and he is glad he has Aspergers Syndrome. I know that sounds bizarre and if you had said that would happen when he was 7, I'd have wanted to slap you. We laugh and we cry about the past. It was one horrendous journey and there were times that I felt absolute despair; carting him out of shops; leaving restaurants with only a spoonful of food in our mouths, never going to cinemas, parties or being invited to anything, let alone sleepovers. No friends, no companionship. Unbuttoning his sisters coat when we explained delicately we weren't going to the park after all. I could write a bloody book.
I mean this with all my heart - go for the assessments. Your sons future depends on it. All strength to you OP. You've got this