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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be convinced this isn't autism

242 replies

Confusedmum1511 · 20/12/2019 17:18

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?

OP posts:
Daisychainsandglitter · 20/12/2019 17:32

My DD is also 5 and has high functioning autism.
She is also very sociable (when she wants to be) and overly so. For example she tries to sometimes hug her peers which is not always welcome.
She is more than capable of holding a conversation and responding to her name. Her conversation however can be one sided as sometimes she doesn't consider people's feelings.
She is also able to recognise simple emotions such as happy, sad and angry but is not able to recognise more complex emotions and misses social cues.
She has many of the issues you describe that your son has. Given that assessments are so difficult to obtain and the waiting time is so lengthy I would attend them.
Autism is a spectrum so your DC may have high functioning autism or what is sometimes described as Asperger's.
It can be difficult to receive a diagnosis (if he gets one) not it does allow you to access a whole wealth of support and understanding.

PanannyPanoo · 20/12/2019 17:32

I would continue with the assessments - if it isnt ASD then the assessments will show this, they may offer suggestions as to other conditions that could explain his behaviour. Or offer behaviour modifications that could help your son with or without an ASD diagnosis.
It sounds like he has additional needs of some decsription that you could both benefit from explanation and support to help you both moving forwards.
I think the best way is to stay in the system it it isn't ASD they may refer you on to a more appropriate service.

I would certainly grab anything offered with both hands. It can be difficult to get anything.

Crazyhouse123 · 20/12/2019 17:32

Please go. This could be describing my DC at the same age. The school and I decided that as it wasn't severe we would manage without a label.

Secondary school has been a nightmare. We have finally got a diagnosis and the relief that my child now has a label and I can access help for them, for myself my family and the school is immense. It doesn't take away the difficulties or issues or reason but it does mean I can access support and the school are able to put things in place to support them.

Just so you know my child is incredibly sociable, this on it's own isn't an indicator.

The system is difficult but you are in there...if you leave and have to go back later it will be months of waiting again.

It is up to you and every child and issue is different but I wish I had done it years ago.

Good luck and Flowers it isn't easy

SpockPaperScissorsLizardRock · 20/12/2019 17:33

My Ds(8) is autistic and passed all 4 blank levels. Further testing found he understands happy, sad etc in himself but has no idea that others feel the same ( impaired theory of mind).

DS is very quiet but he has an Autistic friend who is very sociable. Go to any autism support group and you will see the whole spectrum. The children all have their own challenges and are so very different.

You should have the assessment. Also waiting lists are very long. We waited 3 years from referral to diagnosis.

autumnboys · 20/12/2019 17:33

I would press ahead with the appointments. We went in and out of the system for a long time, with, like you, reasonable doubts and thoughts about what might be up with our child (premature birth, significant visual problems), he was nearly 9 before he was diagnosed and has missed out on a lot of support. There came a point in late KS1/early KS2 when the other children started to really mature emotionally and it was tough to see that gap opening and not really understand why. Now, in year 5, I am just beginning to see signs that it might close eventually.

I do understand how tiring it is and how frustrating, to feel as though you have to fight and parent and piece the jigsaw together all at once. I hope you’ve got plenty of support and love around the two of you. Flowers

TwoOddSocks · 20/12/2019 17:33

It sounds like it could well be asd from your description. I don't think there's any harm in doing the assessments. You'll be asked lots of questions and have the opportunity to make all of the above clear.

ColaFreezePop · 20/12/2019 17:34

I appreciate you are frustrated but if you cancel the appointments how do you plan on getting help with your son's issues? It's not like there are loads of resources available.

As PP have pointed out not everyone with ASD has the same symptoms plus there are other conditions that part of the spectrum of ASD and your son could have one of them.

halcyondays · 20/12/2019 17:34

Yabu. None of that rules out autism and why do you think he enjoys hurting you?

DrManhattan · 20/12/2019 17:35

A child with autism is a child with austism. They are all different. Its your duty as a parent to go through the tests and check things out.

thefarmerhasawife · 20/12/2019 17:35

Honestly I would press on with the appointments. My son wasn't diagnosed as ASD (Aspergers then) until he was 14. We did start the process at 4 but stopped as my husband wasn't on board with it and refused to believe there was anything wrong him. My son totally fell apart when he moved from the security of primary school. Like everyone else has said it's a spectrum disorder. It's not to label him, it'll help him with regards to support at school.

PinkyU · 20/12/2019 17:36

What other medical diagnoses are ‘labels’?

Downs Syndrome?
Cerebral palsy?
Deafness?
Epilepsy?

Also, the average age of an ASD diagnosis in the UK is around 5 years, not 2 or 3, most children that age are only just being identified as in need of assessment.

OP if your ds has been on ‘the pathway’ since age 2 and are now 5 with an up coming ADOS then that sounds absolutely textbook. Whilst it is frustrating to await an absolute, the process is rigorous and does require time an ongoing assessment. If you opt out at this point you may very well need to opt back in at some point in the future which would entail starting from scratch. Would you be able to do all this again but with an older and potentially more affected child?

ifeellikeanidiot · 20/12/2019 17:36

If you would like asd ruled out then surely the logical move would be to go to the assessments.

gamerchick · 20/12/2019 17:37

Nothing you've listed rules out autism OP. Keep the appointments.

LatteLady · 20/12/2019 17:37

I know you may not like the thought of a label and understand that but it gives you access. At school he will have more money, each child is weighted and a disability brings a higher premium, it will be invested in him and therefore he will receive more support. My god son is autistic and has no oral communication skills whatsoever, his father would not accept this at all. It was only when the speech therapist took him aside and laid it out in fairly blunt terms he realised that his son would never converse with him but would possibly be able to communicate by other means.

Use the assessments to get all the help that he will need going forward. He will thank you in the future and you will be ensuring that everything is done to make the best use of all his skills.

myohmywhatawonderfulday · 20/12/2019 17:37

Your son is completely himself - with his ways of doing things, interacting and exploring the world. When reading about Autism its important to remember that you are looking at indicators. They build together to present a picture that can help us to help our children. It indicators what might be stressful, what may need support but at the end of the day we can only work with our children as individuals.

The system is based on beauracracy and waiting and is frustrating. If you can breathe through it - it will help. Why a diagnosis of autism is worth holding on to the end for is because it can give certain protections in regards to employers having to make accomodations for your son's condition. So why it may be a pain in the bum right now it might just be the thing that helps him stay financially independent later on in life when you are not here. (Not to be morbid - sorry).

Tableclothing · 20/12/2019 17:38

Some people with autism are extremely empathetic. Being able to recognise simple emotions isn't something that would rule out autism.

Being overly sociable is also consistent with social communication difficulties - lack of understanding is still there.

OP, talk to the professionals about the way you're feeling and your concerns that your child enjoys hurting you. That is something that needs to be fixed.

Nuttyaboutnutella · 20/12/2019 17:39

My boy is almost 3. We've got out first appointment next month for an autism assessment. I know he's got it (just gut instinct) he doesn't fit some of the signs but does for others. That's why it's called a spectrum.

Take him. The professionals are best at knowing of a person has it or not. It won't hurt to take him.

teentree · 20/12/2019 17:39

Continue to have him assessed. You are doing him no favours by any other course of action.

MyDcAreMarvel · 20/12/2019 17:39

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
All these my dd with asd does.

Mummy0ftwo12 · 20/12/2019 17:41

My son went through the ADOS and multi disciplinary assessments this time last year, I honestly think that if your DS does not have autism then that's what they will find - if he does then he does.

99RedBalloonsFloating · 20/12/2019 17:43

My sibling is autistic and when we were young there was such little awareness of ASD and only on place in the country for diagnosis. As a result she was not diagnosed until she was 11. It was much easier in so many ways after her diagnosis, for her and for everyone around her.

I also worked with young autistic people for a while and it is very very common for parents to be in denial about their child's autism. There are lots of features of autism - including the fact that it is a spectrum disorder - that I think make it very hard to get your head around and ultimately accept if it is the case. Maybe this isn't you, but what's the harm in having the assessment if you child turns out not to be autistic.

Mummy0ftwo12 · 20/12/2019 17:44

just to be clearer its a multi disciplinary assessment because so many professionals and assessments are involved including ADOS - they wouldn't all be wrong.

housinghelp101 · 20/12/2019 17:45

I think it is incredibly selfish for a parent not to pursue a diagnosis because they cannot deal with the 'label'. Why is ASD the only diagnosis that is considered labelling? I have never heard of this in conjunction with any other medical issue.

Bourbonbiccy · 20/12/2019 17:46

Surely if you want to find out the "real cause" ( as you put it) you need to take him to the assessment to so that can be confirmed by the trained professionals.

I think it's best for your child if you go to the assessments.

whyismysoullost · 20/12/2019 17:48

Mummy0ftwo You'll be surprised. There are some children who have been misdiagnosed with Autism that I know. But that's for another thread.