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?

Two0ddsocks You can definitely diagnose children with ASD at two or three years of age. The multitude of children that I work with, well where the LA I work on, most have been diagnosed at three years of age, a few at 2. High functioning or low functioning does not come into it.

You described my DD (5) in your OP. She was diagnosed with ASD two years ago. I find her behaviour is changing as she's maturing. The assessments will rule out anything and give you (both) peace of mind and you can focus on the level of support you may need.

@Confusedmum1511 It sounds very tough for you and I am so sorry. It is tough.

My DD is on the spectrum and it makes life very challenging for her, and me.

I would not cancel because you need to find out what they are going
to say.

@Absoluteunit "Your DS may really need the support that diagnosis hopefully brings some day." Can I ask if you have a child with autism and if so what support your child with autism gets, please?

In fact does anyone have any info on support?

Personally, I would really recommend the 'All Things Autism' course, from Autism Family Support.

My son with asd laughs if he hurts me, he's said it just comes out his mouth he doesn't think it's funny. He will also squeeze my hand really hard so it hurts if he's somewhere that's too much for him and he can't cope with it.

Your DS is 5 ! I'm sorry to say but that it considered late for a diagnosis. Most children get diagnosed at 2 or 3 years of age.

Nonsense. Many parents don’t realises that there is anything different about their child until they start more formal education at 5. I’ve known many parents who have been turned away by the doctor and told to come back when their child is 6 or 7.

would like ASD ruled out so I can focus on the real cause that my child enjoys hurting me

You will only conclusively rule out ASD by going to the assessments. If it is not ASD, you will at least then have very comprehensive documentation of his issues. Which could lead to other diagnoses and help.

I have to say, though, that my DS with ASD presented exactly as yours at the age of 5. And he was also very violent to me. Having the diagnosis and staying in "the system" really helped me to get support when he became a teen and his violence incredibly damaging.

I would take all help offered and allow the experts to guide you. Thinking you know better than them will not put you in a strong position to get help when you really need them.

My dd was placed in the 1st percentile for overall autism severity. The specialists say that she has more in common with neurotypical people than with most people on the autism spectrum, but that her rigidity and sensory issues are in the 50th percentile of the autism spectrum so she qualifies. She does need help on those issues and I am glad to have it, but I’m not remotely worried about her future.

I think it was easier when they distinguished between aspergers and autism because the spectrum is so very wide.

Very socialable (overly so)
Does respond to name and conversation initian on his terms

I'd put those into the "Bits that fit" list. Being overly sociable is indicative of a lack of understanding of social boundaries, and only responding on his terms is an ASD trait. None of it is conclusive, of course. I think you'd really regret cancelling assessments.

Why on earth would you cancel???
The bits that do fit outweigh the bits that don't. I have a child with autism who can recognise emotion, it is a broad spectrum and no two children with autism are the same.
The system is frustrating and long and drawn out but it's better to work with it than opt-out.

Kee going with the assessment, OP. My DS was diagnosed at 5 yrs old after being ‘in the system’ for 2.5 years.

I won’t pretend his diagnosis was a magic solution to anything, but 10 years down the line I will say it’s been the key to unlocking a lot of support for him and for our family, and more recently for him starting to be able to understand himself.

My DS was also ‘atypical’. Very sociable as a small child, good eye contact, great verbal communication, met all his developmental milestones, a real little bright spark.

He struggled massively with sensory overload and really being able to read social cues as he got older and expectations for social interaction became more sophisticated and complex. His autism has become much more apparent.

I know it’s hard. It’s frustrating and scary. But keep going.

Age 5 isn’t late for a diagnosis, omg what pish

OP you are on a roll so don’t cancel the assessment. Just get it done , tick it off , it’s hard enough to get to assessment stage for some.

The one thing i do not understand OP is you are pretty sure your sons behaviour is not due to potential ASD and I think you are saying you wonder if it is because you have not taught him how to behave correctly.
I am sure you are doing everything you can to instil good behaviour into your child and stop him biting and lashing out at you so the very fact that this is not working means there is some other factor at play which needs to be considered. It is vitally important the assessment takes place because of this.
you are struggling with a young child, assume you decide to ignore the assessment, no light is ever shed and you are removing yourself from help pathways. What happens when you have a 13 year old son. If you cannot manage a small child now, but wont accept the option to see if there are issues or help that can explain and help, you will before that long find yourself alone with a man sized whirlwind, then what? You have never dealt with the problem. Accept help whilst you have the offer, it's not easy to come by. And if it isnt ASD, strategies to help the situation may also be given.
You arent doing your child justice if you remove him from the assessment system now as you are potentially removing opportunities which can make his life easier.
I just don't understand this.

I should also add my DS has a dual diagnosis of ADHD. That came later. Both diagnoses have helped us and professional better understand his needs and strategies to support him. And at 15 yrs old, they are a crucial way for him to learn more about himself.

Flamingo Not nonsense. Age 5 plus is late for a diagnosis. What does formal education have to do with it ? A child can display autistic traits very early on. Some parents are able to pick this up, some parents suspect something is amiss but wait till the child is older to confirm anything.

Unlike other issues it is impossible to diagnose autism using a box ticking type exercise. The spectrum is HUGE. Every child with (or indeed without) an ASD diagnosis is completely different. I guarantee you there will be children who match your description above who will have ASD and equally others that match that will not.

I’ve spoken to professionals who carry out the diagnostic assessments and even they say that they don’t know the outcome after completing the assessment as they have to input the data to the computer for analysis.

Get the assessment. It is entirely possible that he has ASD AND something else (ASD is rarely an issue in isolation). It’s also entirely possible he doesn’t have ASD and that confirmation will assist you in moving forward to identify what the issue/s are.

At 5 I thought my DS had some traits but didnt fit the criteria for diagnosis. On his ADOS he scored 16. So I was clearly wrong... at 7 his ASD is far more obvious but because he has a diagnosis his school are supportive and adaptations are made, he is thriving and happy. Without his diagnosis it would be a very very different and much more difficult world.

It can be common for parents with SEND children with ASD or ADHD related conditions to feel like the child has a psychological problem instead of the diagnosed condition. That's because their behaviour can often seem so violent and cruel that hate or sadism must be part of the motivation. It is normal to feel like that but these conditions can show in a child with these types of behaviour that you would never expect from someone so young. It isnt your fault and addressing sensory needs nearly always helps once you get to the bottom of their needs. I'm not trying to make it sound easy because it certainly isnt. Especially as a mum. It is a bit easier when you are a professional dealing with SEND kids.

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!

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.

Five isn’t late at all.

Thank you. I just so desperately wish it was a clear cut case. Until we get some sort of answer I think I just am at the point where I feel my son hates me and that's the only necessary explanation.

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.

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.

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

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.