To chase a asd diagnosis or not (again!)

[2boysnamedR]

So if you don't know my story ds is six. I thought from 18 months he had asd. Many years of seeing all sorts of people and he has dx with dyspraxia, lang disorder, SPd last year. Still have some nagging feelings about asd but his pead said it can't be because he laughs smiles and makes eye contact.

Going to tribunal in Oct so got a private ep in. Mentioned my asd doubts and she got me to fill in two forms and assessed him at home and school. She said he has asd.

Told his new pead but got a letter today from pead saying his previous pead dismissed asd and she sees no reason to revisit that disision!

Remember ds has dyspraxia and SPd but here are his traits

Tip toe walker
Flapping
Clothes chewing
Only wants to play his games at school and socially awkward
Fussy eater
Learning delays
No routines or rituals and generally placid and wants to please
Little empathy
Impulsive behaviour
Can meltdown big time but I can 95% of the time diffuse that. If I don't he almost a passes out in rage!

I'm just not sure anymore. Gut says he has asd but not sure if it's bad enough to fight for a dx with everything else I have on my plate. His dad and little brov have just been dx with a chromosome dup that has been linked to autism. Wouldn't be surprised if the toddler will get a autisum dx but again he smiles and laughs. He has no willingness to please and doesn't like to interact like his brother was at two

[2boysnamedR]

Dad has zero symptoms from the chromosome duplication. He is a extrovert who loves being centre of attention and acting the fool ( think 18 in a 40 year olds body!)

[Glittery7]

Am still incredulous that a professional in paediatrics could discount ASD on the grounds of laughing, making eye contact and expressing a range of emotions.
My 5 year old DD has always displayed the following but when we finally got her assessed last year the diagnosis of autism was apparently straightforward and clear cut.

[ouryve]

Both of mine smile and laugh and even make eye contact, though DS1 is less free with the eye contact than DS2. Good grief!

[2boysnamedR]

She used two question airs - I will look them up. She also said he offers no spontaneous speech.

I do think he sits somewhere on the spectrum as although all his physical traits could be sensory and dyspraxia it's the things he says. Like he told his dad he wants to work with him when grows up. He then said completely dead pan - will you be dead when I'm grown up? Dad said maybe and he didn't seem upset. I don't know, little things niggle at me. He is also saying each day is the worse day of his life a lot now. We went swimming yesterday and he was slashed a lot so again it could be sensory but he won't expect it's just one of those annoying things. Also the toddler was running off so ds was slapping him!

The pead has refused a mulitdisaplinary point blank. Gp won't back me up. Plus no one will agree to getting the rest of the toddlers siblings tested for this gene. I'm having our fourth baby in three weeks and every child has 50% chance they inherited it! But I can't even get my dyspraxic child tested!

Last shot is to get the genetasist to do the chromosome test but this asd thing - I don't seem to have any options left

[2boysnamedR]

Splashed - not slashed!

What if both kids have this gene and the toddler gets a autisum dx?

I feel like I'm being forced to get everything done privately. My hv said its rare for a parent to want their child to have asd. For god sake it's the last thing I want!! But at the se time if he has it I want to know so I can help him! Not just ignore it

[2boysnamedR]

If the NHS are so sure DS has not got ASD then why not just test him and say to me 'look shut up already about ASD!' Had early years around today for my toddler and they are bringing it up for me in a meeting with the doctors next week.

The reasons this is back on my mind is that he is not doing great socially at school and more - I worry when he hits his teens. What if it becomes more of a issue and then the NHS say it was ruled out years ago? He has been sitting with a face like thunder for a hour today as I wanted to watch some common wealth games - why not have a five minute strop then find something else? He is six! I could see him festering and mad for ages!

Ah poo. I just really wish all of this would go away and do one. But it's never going anywhere. DS is just very complex but not bad enough in any area for anyone to be as concerned as me (except for his lang disorder as its too bad to ignore). He was chatting away today, starts off as a normal conversation then he gets more excited and it desends into gibberish. At least he is interesting. Quirky little enigma - I just want to solve him. He is like a infuriating rubix cube and I don't know they work either ;0/

[MeirEyaNewAlibi]

If you were to ask again for a diagnostic assessment after seeing the geneticist, and after knowing whether or not the smallest dc has asd, it'd be much harder to write you off as a deranged mother.

Meanwhile, you'd have been acumulating hard evidence of the various difficulties. And he'd be a little older, so harder to write off as 'let's wait & see, he might grow out of it as we tackle the language issues'

[2boysnamedR]

Thanks, good advice. I'm not going to get a dx in time for Octobers tribunal anyway.

[MeirEyaNewAlibi]

One battle at a time

[2boysnamedR]

Thanks x your right. Plus I'm not mentally ready for another blow - just yet! ;0)