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?

Do the assessment
Overly sociable is another side of the spectrum.
If it s the ADOS assessment it s very useful

You’ve nothing to lose by continuing with the assessments. I know it’s exhausting I’ve been there with my own children but it’s better to have that diagnosis if there’s something to diagnose than pretend that there’s no issues (and it sounds like there’s some at least).

Check out PDA (Pathological Demand Avoidance)
Kids with PDA are not typical in that they are more sociable and make eye contact. My DSD’s ASD wasn’t diagnosed until she was 11 because she was an expert “masker” in primary school but as soon as she got to secondary, her anxiety rocketed and we sought a private psychiatrist who diagnosed her straight away with ASD and PDA.
We are now (since diagnosis) much more well informed about providing DSD with an environment that supports her (low demand)
Good luck

I often wonder if my 13 year old is on the spectrum. At home he is a pain he annoys his siblings and generally doesn’t listen. At school though he’s the perfect child always good in class and has lots of friends! I just don’t understand how he can be so Jekyll and Hyde like! I know the teachers won’t understand as he’s so good, and I know he won’t go the the GP. He is a very difficult child and it’s exhausting sometimes.

My son makes eye contact and is very sociable. He also had meltdowns that had me hiding behind a baby gate until they stopped. You need the ADOS done by a developmental paediatrician. The NHS pathway to a diagnosis for high functioning is APPALLING and leaves many families in limbo hell for years. Keep going. Get the ADOS done.

en.wikipedia.org/wiki/Pathological_demand_avoidance please read this - about PDA which may describe the antisocial aspects of ds behaviour - there are other co-morbid diagnosis as others have mentioned - op -you aren't an expert but the people you are going to see are & they can recognise other diagnosis or behavioural problems - what you should do is listen & ask others who deal with your dc about his behaviour - how is he with classmates - for instance -does he share, does he play with them, can he take turns? not every dc(or adult) with asd conforms to every symptom. Make notes of thing he does that concerns you even if you don't connect them with asd. One of my big bugbears is eye contact - it is not an essential part of a diagnosis. As for being social - its whether it conforms to his peer group behaviour & stage of development. & as most people can tell you the difference widens as the child matures & their peer develops into adolescence - when a mild difference changes into an abyss. But - with support & social education they can learn which is why it is so important to get the help HE will need (please note the capitals!!!) & if you get him help it will help you , both in understanding him & helping him & not feeling like you aren't being a good parent. To many times as parents of dc with these kind of issues we are made to feel failures - which we aren't - so please go along to the assessment for both your sakes.

Nothing you have said rules out autism. It’s a spectrum and every child with will have a different range of traits.

I am in a very similar position to you right now and the only thing I’ll say is that any potential diagnosis is his and not yours. I’m not sure you have the right to deny him something that may actually have a positive effect on his life, particularly where behaviour expectation and management at school is concerned

But unless you get the assessment you won’t know, surely that’s obvious. It’s not easy to get assessed either so don’t cancel.

My high functioning ASD child knows their name and has conversations. They’re also really bright. It’s a spectrum. It’s not a one size fits all.

I’d go for the assessment. If he’s not autistic, he probably won’t get a diagnosis.

FWIW, my 11 year old ticks many boxes on both your for and against lists. He’s most definitely autistic. That doesn’t mean your son is, but I wouldn’t rule it out just on those things.

If he is autistic he won’t become any less so just because he doesn’t have a diagnosis. I appreciate your exhaustion with the system and I hate to tell you it doesn’t actually get any better IME anyway, but it’s hard to get help, do anything that might make it easier.

DD is within spectrum & a mature young woman who works & lives nearly (!) completely independently of us (with support & the internet & phone support as well as physical when required & a lot of lists!!!)

ASD is diagnosed by a medically trained physician.
You say that he is prone to physical meltdowns. As he gets older , they may get worse and you may well need support. Best to get this diagnosed as soon as possible so that you and his school can access support .
You’ll be able to access various support services that can help your family to help him.
His “ horrendously violent “ meltdowns aren’t going to go away and you/school will need support for these.

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?

My DS1 has been under NICU/paeds/children’s services since the day he was born due to being born extremely prematurely. He clearly had additional needs but only really showed signs of ASD from about age 6, and didn’t get a diagnosis until he was 9 and a half in spite of seeing various professionals every six months. His ASD is at the more ‘severe’ end of the spectrum and our LA funds his place at a specialist ASD independent school.

I have just googled the average age for an ASD diagnosis in the UK and a quick google says age 5. I’m surprised it’s that young actually, given that I know of so many children and young adults who were diagnosed much later.

OP you really should go through with the assessment. Whatever the outcome, going through the process can only be advantageous to him.

I don't think you can rule out ASD based on what you have said at all. Definitely go for the assessments!

Something as well that might help you is joining PDA Facebook groups because they show you lots about the daily struggle/ proud moments etc about life with a child who has high functioning autism.

People don’t understand this but the more high functioning you are the harder your life is in many ways because although you find it extremely taxing reading people, being socially acceptable etc people expect so much of you and some become aware that they’re different or aren’t quite ‘getting it’ and can become depressed and more anxious.

DS has just had High Functioning Autism identifed at 8-9. I suspected it, and that his previous diagnoses of dyslexia and dyspraxia weren't the full story, but because he does present quite convincingly as normal much of the time (particularly in school) I was worried that it wouldn't be seen.

He's fortunate that the local school is cosy enough to suit him, and he's in a delightful class where his encyclopaedic knowledge is respected. That the broad and fairly relaxed uniform does not offend his sensory sensibilities.

I get the flack from the masking out of school. Over time I've learned the triggers, but at 5 I was left wondering why my intelligent, articulate (albeit with a history of SALT) child would have aggressive toddler tantrums. It was the 4 hour meltdown starting with him attacking me in the street on the way home during SATs when I began to accept that there was enough out of sync with "normal" and after a horrid summer, went to the GP.

Hindsight explains so much about his behaviour from toddlerhood on.

He has friends (but gets "lost" in unstructured groups"), makes eye contact (although it may drift to something/one safe). He is funny and has a suprisingly dry sense of humour because he is analytical. He can be very empathetic because he is observant but this is not consistent. Around his 1st birthday, a friend was injured in an accident and he was instictively so gentle with her (a contrast to biting his brother in rage!)

There are many traits to the autism spectrum. The extent of them will vary. Some will be more prevelent than others. Some can be masked then explode out when safe after a stressful situation. Some phases may be more out of sync with their peers, some may be more stable as they've manually learned to adjust... until there's a change to react to. Every autistic or ND person is a unique individual as are NT people.

It is absolutely worth investigating why your child's behaviour is different to "normal" Knowing that your shin is bruised because your child is not coping and you're their safe space is very different to thinking that they are chosing to be bad and violent. It means you can defuse them with calm and love (not necessarily consequence free when they are functioning again) rather than antagonising them with anger and punishment. It means that school have better means to put support systems in place, and make more appropriate choices of school. Knowledge is power, and while it can't solve everything, it helps you to manage it better which is good for everyone.

@Confusedmum1511 Know that it’s not your fault and your DS doesn’t enjoy hurting you. Whether he has ASD or not, (and I would think he easily could have from how you describe him) the assessment won’t change him. An ASD do isn’t a label, it’s a gateway to access intervention. It isn’t a magic bullet either. There isn’t a lot provided these days, but in some cases having the DX helps. Good luck in your journey. It can get a lot better with time, though there may be more bumps in the road to come.

My DS2 is 20 now, he was DXed at 3 (which is very young to be DXed, he was lucky.) Life has taken a different path for me, it takes time to grieve for the child you ‘should have had’ and to accept that the child you do have isn’t NT. You’ll get through it. MN SN was an amazing and supportive resource for me in the earlier days, I hope it can be for you as well, whatever DX or not that your DS gets.

Do you feel the features consistent with ASD cause him significant distress or loss of function? If so then they probably need following up. If you feel that the label is being too hastily applied say so clearly. I doubt any professional would label him asd against your wishes unless there were very serious concerns.

ASD isnt a label its a diagnosis. Nobody gets labelled as athsmatic or as IBS or as Migraine Headaches. You only see this with ASD or ADHD.

Quite frankly it's offensive.

I haven't rtft
Going through similar all the routines, horrendous sensory issues, fear of loud noises, loving and affectionate yet extremely aggressive and grumpy.
We have just completed a full multi discipline private assessment as we are waiting 2 years and he needs it for starting primary school, in Ireland with a diagnoses you can no longer access an sna si we had to choice but to pay. He has full support AIM in preschool.
He has an emotional dysfunction disorder, causes he routines lack of friends rigid routines outbursts crying sessions.
SPD sensory processing disorder.
Dsypraxia.
Main issue is emotional dysfunction disorder now I've read all about it, it fits.

Above my DS is 4.

5 is not late for a diagnosis. My ds was referred at 2, discharged at 5 because they said although he had lots of traits he was coping quite well with life. Now in year 2 aged almost 7 he's waiting to be assessed again due to problems that have arisen at school. I am quite sure he has asd, it can just sometimes take longer to cause problems, I will welcome a diagnosis because he will then not be forgotten about in class, he will get the help he (sometimes) needs to do the best that he can do.

Have a look at PDA. It's recognised as a form of autism.

And actually the fact he laughs when he hurts means he doesn't understand emotions. Learning smiling = happy and crying = sad is rote learning.

My ds can say happy and sad. At 15 despite being highly intelligent he still doesn't understand and recognise or react correctly to emotion. But he can label it through learning.

And autism isn't a bloody label for all those saying it. It's a medical diagnosis. A label is what's out in clothing or on food packages 🙄

Mine has just been diagnosed with ASD and is described perfectly in your Op. Every single example given is spot on. On both points except the meltdowns - mine doesn't have those.
Apparently recognising emotion and being sociable can still be aspects of the personality of a person with ASD.

Definitely sounds like he needs to be assessed.

I worked for years with people with autism and can honestly say it is not a one shoe fits all diagnosis .It is a broad spectrum .One autistic person may be outgoing and social so to speak the other the completely opposite. One thing i will say op to make you really think about cancelling the appts .The child that has huge meltdowns and hits you know will grow into a teenager who is a lot lot stronger with more uncontrollable meltdowns and capable of really hurting you .I have seem it happen. A lot of what you have said does point to autism but none of us in here are experts you need a professional diagnosis of yes or no .Autism is absolutely nothing to be ashamed of .