Feeling completely lost

[Hallybear79]

My DS (5) has been under referral for ASD, dyspraxia & ADHD for the last 12 months. In that time we have been to the hospital twice to discuss the dypraxia & has been referred to an occupational therapist & are still awaiting an appointment. We've seen CAMHS once & had conners forms sent through the post to myself & school.
On our meeting they said they didn't think it was ADHD.

Today I received a copy of a letter sent to the lady on our case saying there will be no further referral for ASD as theres not enough evidence of it but to discuss a further ADHD referral. I should be doing cartwheels that its one diagnosis less but instead i feel sad, confused, angry to name a few. It really doesn't feel right & when i told my sons teacher & SENCO they said the same. I've had a feeling my son was ASD since he was 18 mths & has so many traits so what i really need to know is apart from the obvious things like delays in motor skills in dyspraxia & inability to sit still etc for ADHD what ASD traits and quirks do children with dyspraxia & ADHD have?
I just can't see how they can come to that decision after a 1 hour meeting.

How frustrating for you. You know your child best. If you are not happy, you can ask for a referral to a specialist centre like Gt Ormond St.

I agree with IE. You know your child a whole lot better than anyone who has just met him for an hour or so. And when the school is also saying they think a wrong decision has been made (and they know him quite well too) then you really need to challenge the decision.

The best thing to do is to write (not phone or email, but a letter, in writing) stating that you are surprised that an ADHD investigation has been requested as you've already been told they had ruled out that condition and also express the concern of school and you, as parents, that they are not continuing with the assessment for possible ASD and state that you wish that decision to be reconsidered as you feel there is significant evidence of ASD.

Only by putting it in writing in a calm manner will anyone actually take any notice of what you want.

Best wishes

Thanks. I'm glad i've had it in writing rather than a phone call as it really knocked me off my feet. I literally read it over about 15 times whilst shaking then just burst into tears. At least its given me time to get myself together, collect my thoughts & think about what to do next. You're right though it is a mothers instinct but also 14 years of working in childcare as well. Thats why i need a bit more knowledge on the quirks of the other conditions because im really trying to look at the decision from both sides but at the moment nothing is stopping the alarm bells from saying wrong decision

Don't feel that you can't challenge the decision, because you can. It would be worse to let your DS continue undiagnosed or with the wrong diagnosis.
By putting it in writing you've put your concerns on file. It's also a good idea to copy someone else in on your response. such as GP or school (or both) as the NHS cannot then say they didn't receive your letter and also, by copying in others, they will treat it seriously.

It's a right old game isn't it?

During Dd3's assessment process a Paediatrician once tried to discharge her with just advice about managing her behaviour.

I wrote back straight away and reminded her that she has suggested doing an ADOS on Dd3 and that I had sought a referral due to her anxiety and my suspicians that she had Asd.

The decision to discharge was reversed and various Proffs continued to assess Dd3, she never did have an ADOS but she did get a diagnosis of Asd!!

You need to be strong and fight for your son.

Good luck

Very good advice Tinsel.