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?

If it isn't autism it could be something else that is highlighted. It would be doing a disservice to your son by not pursuing it and it seems like you are readily accepting that it is down to you and your parenting, which isn't the case.

Your ds is still young and his development may improve over time but if he does get a dg of asd then doors will open for you and Him in terms of support. Don't give up even if it is a hard process.

My dd was 8 when she was dg with autism and adhd after being referred at 5. When the dg came it was like a weight lifted off her shoulders as she finally knew why she was the way she was, and that people will be able to understand her better. She has thrived this part year due to the support given to her since her diagnosis.

Most people would not think she is autistic and would probably just label her as a funny/weird character but fully functioning.

In a way diagnosis also protects her as I won't know how she will develop in to adult hood but atm it flags up that she will be a vulnerable adult, she will always have people to support and protect her.

Based on my own experience, I would stay in the system. DS had some traits as a toddler but, like your child, had many things pointing towards him not having ASD. Tbh I was in denial and didn't want him diagnosed which, in retrospect, was incredibly selfish of me. He was assessed at age 7 after concern raised by school and again (to my relief) was told that he didn't meet the criteria, although I do think I subconsciously withheld information during the assessment as I didn't want a diagnosis. We were discharged from the system and I was convinced he wasn't autistic. He coasted along ok for the remainder of primary but was clearly different to his peers.

Then, he went to high school and it was a complete disaster! He couldn't cope with the change, having to move from class to class, organising himself. He was also bullied by kids who labelled him a weirdo (his primary peers had accepted him for who he was, now he'd been thrown to the lions!). Poor kid nearly had a nervous breakdown. He was eventually re-referred but was at the bottom of the waiting list so it was nearly 2 years before he received a diagnosis of HF ASD age 14 and started receiving the help he deserved.

I can't help thinking that if I hadn't been so resistant he would've been diagnosed much earlier and gone into high school with support in place.

I"ve since learnt a lot more about autism and realise that, in many cases, it is not the end of the world and makes my son the wonderful unique person he is.

Thank God my son is in a much better place now but I regret every day what he went through. Please learn by my mistakes.

No, definitely not the end of the world.

DS1 is autistic and I recall so clearly when his school recommended he get assessed. I was wandering around Sainsburys in tears and then realised that it made no difference. He was still my gorgeous boy and I would not change him in any way.

The diagnosis has opened doors in that we can access extra help at school. His teachers 'get him' more now. It can be hard, and we have chosen to not share his diagnosis with all and sundry (until he chooses to do so... he does not actually understand it at the moment). So it is hard to face other people's prejudices. For example, when he was about 5 he had a meltdown while we were at church and I took him outside. Someone came out afterwards and sneered 'what is wrong with that child Is he autistic or something?'.

The thing i hate the most is people using the word autistic as a perjorative or think it means the child is not empathetic. Or they blame your parenting- the myth of the refrigerator mnother still prevails in some circles. But my DS an utter joy. He is funny, his outlook on life is really interesting. he is incredibly kind and sensitive. He is getting bullied at the moment and he just asks me 'why is -name of bullying kid- like this to me? is he really sad about his life?'

The things he gets really obsessed about are invariably quite interesting when you get into it at that depth. It's generally been a total joy to parent him. Not without challenges, but he is a terrific little kid.

Just saw your update @Confusedmum1511.

It's the right thing. I think we all feel like giving up sometimes, and there are times I feel like I'm crazy or paranoid, or just a really bad parent because DD must hate me to be the way she is with me. I don't want to label her or cause her to be stigmatized. But deep down I know something's not right. I know she thinks very differently and that she will be labelled and stigmatized with or without a diagnosis. At least a diagnosis opens doors for support, for us as parents as well as for her.

Before I realised the depth of her anxiety around certain issues I opposed her, for which I'm wracked with guilt. Now I understand a bit more, I can do my job as a mother properly and stand with her, against the whole world if need be.

I heard something somewhere which has really stuck with me, and maybe it will help you too:

It's not people with autism that are wrong, it's everybody else.

@hookiwooki please do not feel guilty, we all make mistakes. My dd is 15, diagnosed 18 months and I am only just realising the depths of her overloads.

Thank you @Italiangreyhound. We're in that awful stage of needing a diagnosis because everyone believes she is fine, particularly at school. She is categorically not fine, as demonstrated by the way she collapses emotionally at home.

The SENCo is the first person to take us seriously, but her hands are somewhat tied due to DD masking.

We did manage to get it brought up at a services meeting a couple of years ago but she was passed off as no concerns by her nursery team leader (despite obvious-at-the-time sensory and social difficulties) and it got dropped.

She has adjustments at school and we have regular meetings with the SENCo but I think we're in for a bit of a wait still.

In the meantime we're doing what we can at home. I've attended the suggested parenting courses, trialled the prescribed behaviour management techniques - none of which work with DD as she doesn't respond to positive reinforcement. And obviously I've made adjustments at home with regard to sensory issues and anxiety triggers.

At weekends and in the holidays she's a dream, I think Christmas will be ok this year with some careful planning, but on school days she really struggles and I'm not sure how to help her.

@hookiwooki I am so sorry to hear this. I am sure you know girls mask a lot, they learn to do things that make them look like they are not on the spectrum. That's why they don't get diagnosed so early sometimes.

I looked at Aspi girls stuff etc, especially from the states, on line. Aspi/Aspergers is not a term used in the UK so much now but the Dr who diagnosed my dd said that that term still applied and books about that would be helpful.

Good luck

How you doing @Confusedmum1511

whyismysoullost how utterly untrue that most children are diagnosed at age 2-3 you obviously don’t work in CAMHS.
Op I wonder what you think the real cause is ?

I have three diagnosed children and a nearly six year old on the pathway. My dc were diagnosed at 8, 17 and 5.

I think it's because I have failed to teach him to not be violent and have accidently taught him that it is ok to attack me. I don't think my child likes me, I honestly don't and now he just sees red when he sees me.

It’s far more likely that he is incredibly frustrated and sees you as his safe zone. So he acts out his frustrations physically, on you. He knows you love him therefore he can behave atrociously without worry that he will lose you.

You haven’t failed him. Please take him to the assessment and get all the help you can with behaviour management. As hard as this is also please don’t take his behaviour towards you personally. He doesn’t hate you.

Even if he doesn’t have ASD there maybe other factors such as an avoidant personality type which could be identified. Basically grab any help you can with both hands.

OP my friend did what you did and out of shame or stupidity or both refused to have a formal diagnosis for her abusive child (he used to be verbally abusive and controlling over her and his sister). He is now a miserable adult and unable to function in society despite having fairly mild autism. His cousin also has a similar form of mild autism but did get treatment and access to coping strategies as a child and is holding down a job, has a girlfriend, and is looking to buy her first house soon. They

I think you'd be unreasonable to cancel. I've been fighting for 18mths to get my 10 yr old assessed and am stuck on waiting lists for god knows how long. I have Aspergers, which is part of the ASD spectrum. I dislike change, have traits of OCD, like routine, I understand emotions, can communicate effectively. I have numerous traits that are effectively neurotypical but doesn't mean I'm not autistic. My son is similar to me. Just because it isn't textbook neurotypical or neurodiverse, doesn't mean it is or isn't.

giggly There are other routes in the NHS to get an assessment for Autism. It's not just the CAMHS team that give out the diagnosis. I would not even recommend going through CAHMS as their waiting lists are atrocious.

How do you know he " chooses not to care " ?....maybe he has difficulty expressing himself.
I haven't read all the previous replies but my ds was diagnosed at 9 years old.
I wouldn't skip the appointments to be honest. You owe it to him.and yourself to see this through. Yes, it's a long, tiresome road , but if I were you, I'd need to know for sure.
Having a diagnosis has really helped my ds. The one major change was our attitude towards his behaviour and our response to it. I think that's had the biggest impact on him .
He did some communication and life skill courses which have helped immensely too.
The best of luck, but if you skip these appointments you may well be out of the system and have a very long wait to be seen again if you change your mind .

Go to the assessment. One of my DD is Autistic, despite being around autistic children and working with them and my friend having an autistic GS we missed it with her until she had an appointment with eating disorders. They saw it straight away luckily as she was over 16. They paid for the tests, I would never have been able to afford them myself.

Now because she was diagnosed so late it is impossible to get her any support (Her university were great putting help in place ) but now she has graduated that has all gone so now she is struggling again. There is just no funding available for her.

Don't cancel an appointment that could benefit your child, if they are autistic do it now so that they can access the system in place that my DD can't x

**:33MyDcAreMarvel

I have three diagnosed children and a nearly six year old on the pathway. My dc were diagnosed at 8, 17 and 5.

Can I ask if you had problems getting help for your 17 year old?

My DD was diagnosed at 17 now 21 but we just can't access any help for her. Wherever we try there is no budget to accept her

ultra Ds is 15 and diagnosed 3 months ago. We are unable to access any support at all. At his diagnosis appointment (that he wasn't even invited to) the paediatrician gave us a handout and told us that was it, zero post diagnosis support. Gp has just done a camhs referral as his mental health is poor but she is not confident of it being accepted. And as for school, we are constantly fighting for tiny amounts of help. Ds does not have an EHCP and the school have just told us that they may be able to access some support for his ASD but we have to pay for it as there is no money in their budget to support him.

It is utterly crap. His diagnosis has not opened up any doors to get more help. We don't regret pushing for assessment but it's tough going at the moment.

Punxs you can apply for ehcp yourself, you don’t need school to do it for you. Then he should get the correct assessments and help

@whyismysoullost
No way would I turn down the assessments.

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.

in boys maybe. I think I'm right in saying autism is usually diagnosed later in girls/women. My daughter was nine years before it was confirmed she had Asperger's.

OP, don't cancel the appointment.

He really doesn't hate you. It might feel like it but there will be a reason. Really there will.

Is 5 really comsidered late for a diagnosis in boys? To be honest though I'm amazed that Ds got to 15 without one. His report says he has significant difficulties with social communication and interaction.

I don't think he would be entitled to an EHCP Penguin School have spent zero on him at the moment. It's a difficult situation and it seems like nobody cares. We are definitely on our own trying to deal with this.

School don’t have to have spent anything!!! The threshold to trigger an assessment for EHCP is very low and it’s far better if you drive it yourself.

Read this:

www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment

I urge you in the strongest terms to apply NOW whilst he is still of compulsory school age.

Sencos say all sorts of nonsense, which they swallow wholesale from the council. Some favourites are “you can’t have an ehcp until we have spent £6k/have 3 terms of ‘review-plan-do/is working at half his chronological age/is academically behind.” All utter bollocks.