To be convinced this isn't autism

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.

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!)

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.

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.

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.

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.

*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?

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.

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.

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.

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.

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/

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.

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

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.

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.

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.

It's a spectrum.

I have a DS who preferred adult company, collared adults to talk at them in 'Little Professor' styleetc. Not cuddly. Not autistic.

I have another DS who is a very snuggly child who loves cuddles, prefers peer group, indulged in imaginative play. Is autistic at the higher end of the spectrum.

Autism is a very complex range of issues. I was constantly told by well meaning friends that my non-autistic child might be autistic and I should have him tested. No one ever suggested DS2 was, and it didn;t occur to me. He didn't get diagnosed until he was twelve. Then suddenly so many tiny challenges hed had all his life made sense. Life has been so much easier for him since his diagnosis. He;s had the support he desperately needed and he;s bloomed socially, in confidence, in social understanding etc.

Don;t rule out testing - it's a very useful and thorough tool. If he is on the spectrum, kit's better for family and school to know.

Oh I'm totally with You!

My DS has ASD and ADHD. He was diagnosed when he was 7 and is 13 now. We are in the process of having his needs reassessed to see if Special Education would be better for him.

I was terrified that the experts would turn round and tell me there was nothing wrong with him. That he doesn't need special help...where would that leave him? What kind of a parent would that make me? Would it finally be revealed that it was all my fault after all? I've tried so so hard.

It turns out that his needs are more severe than they present as...in some areas he is functioning 7 years behind where he should be. Nobody has suggested that it's all my fault.

Deep down I knew this and so do you. It might not be ASD but there will be a reason and you haven't reached the stage of assessment without several people seeing that there is a reason already. If he isn't assessed you just don't know at all and that's not better.

I think your feelings are normal, you're exhausted and worried. You aren't alone though x

I wouldn't turn down the assessments because they will build a picture that should enable you to get more help for your son, even if it turns out that an ASD diagnosis isn't appropriate.

My twins were both diagnosed with asd at 2. They are completely different but both autistic. I’m sorry the process is so long but I would absolutely see it through - the services are only becoming more in demand. A diagnosis means that my boys can now be considered for specialist ASD schools, amongst other things.

Five isn’t late at all.

I should add that my DS was diagnosed at 9 and my DD at 11, so I don't think 5 is late at all.

DS has ASD and ADHD, DD has ASD and GAD. Both present very differently and DD was only assessed due to the paediatrician noticing traits in her while attending appointments with DS. So my point is that as parents, we don't always see the traits.

In both their cases, the diagnoses have helped access more support, both in school and outside. And helped us understand how to manage their life to get the most out of it.

With or without a diagnosis he is still the same child. Any diagnosis will help you and later him understand his needs more and now to support him. It can also help the education system understand him.

I am laughing at the idea of 5 being late to diagnose. Ds was nearly 7 when he was diagnosed and I was told be was quite young to be assessed in this area because the waits are so long!