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Advice needed with a diagnosis dilemma.

(18 Posts)
GoodnessKnows Sun 16-Feb-14 11:18:25

Thank you for clicking.
My DS has had two CAMHS assessment things. They're now referring him to a specialist place (Harper House or somewhere). I've not had a copy of the referral letter yet. But of a waiting fake with CAMHS. I thought that CAMHS were assessing him but turns out they were asking a list of questions as a screener to see whether he'd be suitable for this referral. Turns out that he 'scored hoghy' abd on the phone CAMHS man who 'assessed him' tmd me (when asked) that his high score would relate to likelihood of having autism (asperges - as his communication skills are ace).

Anyway, my dilemma has been caused by two things:
A) many people (friends and family) say NOT to get him 'labelled for life'. That it'll go against him. He'll not get insurance when learning to drive, all kinds of stuff.
B) He isn't easily directed (always has his own agenda - usually extremely clever, instantaneous and more interesting than that of the 'adult in charge's'). His teacher this year is remarkably good. But I worry about future years. Reeeeeeally worry.

He was in a state school. It was horrible. Wonderful school. I used to teach there. But he was young 3.5-4.5 without a diagnosis and blasted out (shouted at until he couldn't move - sensory overload and anxiety) on numerous occasions). I reported it, they became defensive and requested a Health Visitor observe him. I welcomed this and she reported to me, off record, that I ought to find a different school as they were extremely negative with and about him, screaming his name across the room constantly, for mild antics (trying to take something out of the bin, etcetera.). I could continue.
My DH tragically lost both parents and we sent DS to a school that is fantastic for bright boys.

ANYWAY, what do I do?
I'm scared NOT to or TO reveal his diagnosis (if ever given) to his prep school. I'm afraid as they might use it against him, saying that they're not able to cadge for his needs (if he's tricky).

Hope I've not been too muddled.

RightRoyalPainInTheArse Sun 16-Feb-14 12:08:19

I think it's worth knowing, you can choose whether to disclose or not if he has got ASD. It might provide some protections in the future. I think the car insurance thing is a bit odd, never heard that being refused for ASD.

DS1 is at a specialist HFA/ASD school so there's no hiding that on his CV. How old is your DS? You've got no idea what the future holds and what support might be needed so I would follow the path and see where it leads. If they say unsupportive things just say 'well, we can all support him, not knowing won't make his thoughts and feelings go away'.

What's your gut reaction? Think about what he might need to know about himself, irrespective of what others may or may think.

bochead Sun 16-Feb-14 12:30:38

The disability won't go away - the support required to make it through to adulthood without developing a secondary mental health condition, and to gain the life and academic skills is much less likely to happen without a diagnosis though.

I have a particular disdain for people who opine on what they know nothing about. Noone would expect a child who needed them to learn to read without spectacles, so why do people expect children with invisible disabilities to cope? Given the massive difference to a person's life chances early interventions and therapies can make, it's a shame when a family wastes valuable years in denial. Far better a diagnosis is obtained in the primary years than via the youth offenders system etc when it's too late.

Everyone gets labelled but what you don't want is for your child to be labelled as delinquent, stupid, naughty, rude etc by teachers, police, employers etc. If the school can't cater for his needs, then having a formal diagnosis or not won't make a jot of difference; however their willingness to support him may be affected without one as the visible gap between his NT peers will only increase with age.

GoodnessKnows Sun 16-Feb-14 12:52:49

What do I think? Good question. I think that I'd rather he had the label autistic than rude. I think that I worry about how it'll affect him in the future. I worry that his behaviour appears to be obnoxious irrespective of any diagnosis and will continue to do so. I worry about first response to my thread, that it will get worse. I'm hoping the opposite but am not prepared to keep my head in the sand any more.
I worry...

RightRoyalPainInTheArse Sun 16-Feb-14 12:59:05

How old is he?

autumnsmum Sun 16-Feb-14 13:01:48

I agree wholeheartedly with bochead it's a diagnosis not a label .if a child had a physical issue such as diabetes or kidney problems would they be denied insulin or dialysis because it's labelling them . If I had listened to family we would be pretending dd2 is fine she's statemented and in a special school

Levantine Sun 16-Feb-14 15:04:37

GoodnessKnows I agree with Bochead, my ds1 was labelled naughty, aggressive etc before diagnosis. Also as he has got older it has made a very big difference to him to be able to explain why he finds certain things difficult. You are absolutely in control of who you tell about his diagnosis at any time, but I really can't imagine parenting my son without understanding what is going on for him

bochead Sun 16-Feb-14 16:23:29

The only time in recent decades my ex has disclosed his diagnosis to anyone was when he was hospitalised. It was better for the nurses to know he was on the spectrum so they could properly support him when he was feeling awful and in pain than for everyone to suffer. (Adults can melt down too!). His employers haven't known for the last twenty years, as he's had no need to tell them.

One of my neighbours back in London is 6 foot 7, mixed race and on the spectrum. He carries an autism alert card to show police, after being arrested for rudeness & thrown in police cells overnight one time. As I'm sure you can imagine, he was an emotional wreck by the time he was released, as he wasn't trying to antagonise them.

Knowing he's on the spectrum, they were brilliant once he "started carrying" in his late teens, as he got lost/confused a few times when learning to use public transport in London etc. (Sadly they regard ASD as a potential victim of violence etc without support). The difference in their attitudes was phenomenal, and gave him the security he needed to learn really important life skills safely. I don't think without disclosure at appropriate times he'd have got a first class degree, and got to the point where he's now happily married with a baby.

What you don't have to do is disclose a diagnosis to family or friends who are too ignorant to understand. I haven't bothered telling everyone in my social circle - no point in subjecting DS to pointless gossip. However it's important the RIGHT people know, such as medical staff if that makes sense.

ASD is a lifelong condition, I'm not sure that for everyone it has to be a lifelong handicap in ALL circumstances & at all times iyswim.

bochead Sun 16-Feb-14 16:24:55

Susan Boyle has some interesting comments on the value of a diagnosis. I find it quite helpful to look at the adult experience of ASD and wish that the NAS would do more to give adults a voice.

RightRoyalPainInTheArse Sun 16-Feb-14 16:43:34

The whole village/ town know here as S1 had to leave ms for ss. I still think his life chances are better at the ss, we'll see.

GoodnessKnows Sun 16-Feb-14 18:06:40

He's just turned 6. Yr 1. I agree wholeheartedly, but since he seems high functioning/ able to go under the radar (just appears to be belligerent, wilful and a bit disruptive as doesn't like to go along so the the group according to instructions and distracts a bit instead, I don't know whether it's best to leg it be if school can handle him.
I'm going to go along with the diagnosis as I've seen the radical difference that telling out of school clubs hat he's under CAMHS for autism diagnosis has made on their tolerance/ attitude towards and treatment of him. It's remarkable and moving. The negativity (born out of their natural frustration with him) that he'd previously met is a stark contrast. And as a parent it's so much better, too. But I worry a lot what effect a label, IF eventually given, would have on his being at a private school. State school didn't work out. AT all. His current school are wonderful. I just... worry as I'd not like to withhold anything from them IF we eventually did find out that he has HF ASD - asperges. I'm getting all the
- don't you think we could all be on the spectrum
- don't you think he'd be ostracised
- don't you think... rubbish
And so I think.
Too much!!!

His current school gave said no need to have him assessed for a couple more years, but I'd already been to the GP a few times and his 'turn' came up (letter came re preliminary screening/assessment arrived after a year or more of waiting).

My question is: is there any truth about being limited, excluded from policies/ insurances/ holiday kids camps, etc. ?

RightRoyalPainInTheArse Sun 16-Feb-14 18:11:11

Do you think he'd cope in a club that didn't understand? We limped through until 7 and then it all fell apart completely. Keep your options open.

TOWIE2014 Sun 16-Feb-14 18:23:46

My question is: is there any truth about being limited, excluded from policies/ insurances/ holiday kids camps, etc. ?

Holiday kids camp - if he was excluded then this would surely be against disablity laws?

My DS (ADHD/dyslexia/dyspraxia) went to many clubs when I home ed'ed him. I was always honest about his difficulties - and that just made the clubs helpers support him more and allow for his difficulties. One owner of a club became a friend who helped me with some of my trickery route of finding a school who could support him - I found out she had a child on the spectrum so was totally understanding about my DS's difficulties.

My DS (and me!) had a very very bad experience of a prep school. Pre-prep was (relatively) ok(ish). But Year 3 was a disaster. They supported him but should have told me when he was in pre-prep that his needs was way beyond their experiences. It got to the stage where I sat in a meeting with head of year, SENCo, class teacher, TA and LSA who collectively scratched their heads in despair (literally!!) and said "we don't know what to do". I withdrew him shortly after that meeting and home ed'ed him until I got Statement which meets his needs.

But mine was a very very poor experience of a prep school. At that school you would excel (even with SEN) if you were academic, or sporty, or musical, or into drama. My DS didn't fit into of those categories.

Hopefully your DC's school is a lot more understanding

Levantine Sun 16-Feb-14 18:27:29

I have had a similair experience with clubs, both the clubs ds1 does have been fantastic with him. He is in year 2 and it is about this time last year that things fell apart for him. He is very up and down, often you would never guess his dx, sometimes it is quite obvious

GoodnessKnows Sun 16-Feb-14 19:37:12

I agree with where you're all coming from.

Your family and friends are ignorant and speak utter drivel if they are telling you that (your point A). A "label" should simply be seen as a signpost to getting your son more help.

What Bochead wrote in her post as well with particular reference to her second paragraph. It certainly bears repeating in my view:-

"I have a particular disdain for people who opine on what they know nothing about. Noone would expect a child who needed them to learn to read without spectacles, so why do people expect children with invisible disabilities to cope? Given the massive difference to a person's life chances early interventions and therapies can make, it's a shame when a family wastes valuable years in denial. Far better a diagnosis is obtained in the primary years than via the youth offenders system etc when it's too late."

GoodnessKnows Mon 17-Feb-14 20:11:43

So true. I'll stick with it. You've all supported my gut feeling (wobbles aside).

GoodnessKnows Mon 17-Feb-14 20:12:20

Just hope n pray that DS' school are as fabulous as I give them credit for being.

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