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Relative knows more than doctors

(13 Posts)
PastysPrincess Sat 31-Dec-16 00:52:26

So flipping annoyed right now. A visiting relative has diagnosed my son with Autism after only a few hours contact with him (she hasn't seen him in 11 months) and then roundly told me off in front of other relatives as apparently I'm not doing enough to help him. She doesn't know anything about what we are going through with him but because she has a son with Autism she is an expert. What is actually happening is that my son isn't talking yet (he is 2 1/2) but in every other way is totally normal. We are waiting for a hearing test under anaesthesia to see if he is hearing impaired or whether he needs speech therapy but there has been significant delays due to winter bed pressures. We can't start any treatment until we have this diagnosis as the treatments will be totally different but according to this relative I dont need to wait for the Doctors she knows of a website she can print stuff off so again she knows more than the speegh therapist and the paediatric ent consultant angry

I can't wait till she goes home again.

Strokethefurrywall Sat 31-Dec-16 00:53:47

Tell her that having a child with autism does not, in any way, make her an expert on the matter!

Stand up for yourself and your son!

Witchend Sat 31-Dec-16 14:39:29

If he has hearing issues his behaviour can mimic those with Autism in some ways.
Ds has glue ear and the ENT consultants have said this.

What I would say though, is that in our area the wait for SALT is around a year-I would request (unless your area is different) you are on the waiting list just to shorten the wait when you know where you are.

I'd quote to her the statement I've heard from other parents with children who have Autism:
"Once you know a child who has autism, you know one child with autism..."

PastysPrincess Sat 31-Dec-16 18:00:34

We have him on the speech therapist list and on the ENT list too; the HV organised a referall whilst we are waiting for the hearing test so we didn't have to go back to the back of the line since the test has been so delayed. Once we have the hearing test result then they will refer on from there and the HV can apply for further assistance if needed.

I like that statement I shall use that one. Thankgoodness I've not got to see her again for a while.

PastysPrincess Sat 31-Dec-16 18:19:12

I forgot to say I spoke to her today too and she was equally unpleasant. I just told her that since she hasn't seen my son in 11 months she can't possibly know enough about him to make such statements. It's not our fault the NHS is swamped.

Strokethefurrywall Sat 31-Dec-16 19:15:11

Good for you OP, stand firm!

Daisychain2017 Mon 02-Jan-17 04:10:03

Oh that's not nice but was it just the talking delay that caused her to say it or are there other behaviours/symptoms she noticed. It just that you do sound very defensive and perhaps she has a point you aren't wanting to push for all tests etc because you don't want there to be anything wrong with your child (which is a totally normal reaction). She was only trying to help him. I'd ease off her a bit and perhaps take on board some of her points. If your son isn't talking by 2.5 then you have left quite late to start testing etc - I'd have been taking mine at 18 months tbh.

differentnameforthis Mon 02-Jan-17 04:54:46

Well, I do agree that you only know ONE child with autism when you know ONE child with autism...

However, did you ask her WHY she thinks that?
What basis does she have for saying that?
What concerns her about your son that gives her that conclusion?

I am not saying she is correct, but I would be interested to know why she comes to that conclusion. Most parents whose children have autism are very clued up on it, to be fair.

Klaptout Mon 02-Jan-17 04:56:46

It's hard when people are freely using autism to DX your child.
From my experience it never goes well, unless it is the child's parent that are asking. I wouldn't DX someone, if you are closely linked to someone with ASD I think you then feel you see if everywhere.
I often say when you've met one person with autism, you've met one person with autism, my three do have autism, people are often surprised when I say they all present differently, yes even the identical twins.
Alway good to get on waiting lists, appointments can takes ages and can be cancelled if you no longer need them.
My DDs failed both hearing tests at 2 as they started by looking face to face and said their names, they were not interested in someone waving a teddy around and saying their name or looking at someone in their face. They had no interest in pleasing people. They prefer items to people.
They could hear the noise of a chocolate wrapper being opened two rooms away, they then did a specialist test which proved they could hear.

My DS passed his hearing test as he would sit and engage with people.
I always remember our ST saying that it's a different brain pathway for singing, that was fab, we had songs for bath time, brushing hair and teeth and putting socks and shoes on. That got them singing.
To encourage talking we used to read a small selection of favourite rhyming sing songy books, they knew every word but wouldn't say any of them, so I'd get their attention then read but stop just part way through their favourite sentence start to say a very exaggerated favourite word (bear hunt good) and then stop and leave a silence hanging, too of mine would fill the words in as they want the next page.
If that makes any sense. I've found all kids respond to that.
It's not going to cause any damage to try different stuff whilst you wait, avoid visitor at all costs.

differentnameforthis Mon 02-Jan-17 05:02:27

And for what it's worth, a friend successfully "diagnosed" another friend's children as autistic.

forwhom Mon 02-Jan-17 05:15:04

Is he not talking at all?

PastysPrincess Mon 02-Jan-17 07:29:50

I'm not upset at the idea he may have Autism; I'm upset at being spoken to like a child because she thinks I'm not doing enough to help my son even though we haven't got a formal diagnosis of anything. She based her statements on the fact that my son doesn't have good eye contact.

I told her I have infact already mentioned Autism to all the professionals and none of them think he has it at this stage. The suspicion is that he is hearing impaired. Apparently children who are hearing impaired often dont make eye contact because they don't learn to look at people's faces during conversations cos they cant hear you to look up. He doesn't have any other developmental concerns at all; he is bright, alert, social- doesn't have any routines or patterns he has to stick to.

My relative didn't give me chance to tell her what we have been doing for him before she laid into me. The speech therapist at our initial assessment appointment told us to hold items up to our faces when we talk so he learns to look at faces to communicate; (there's lots more but too much to list here).

He doesn't have any formal words yet but he is very communicative. He has sounds for likes and dislikes etc. He is very affectionate and loving and will interact with you.

This isn't about who is correct, I'm coming to terms with the fact that there may be a more significant prognosis to diagnose than the initial hearing loss. The reason I'm upset is that my relative has basically inferred I'm a bad mum when she hasn't got all the facts. It's really upset me and I find myself crying as I write this.

differentnameforthis Mon 02-Jan-17 08:05:37

It does sounds as if she was rather tactless, op..and what you are going through would be incredibly stressful on its own without that.

Don't let her words upset you...some people do seem to take on the self titled "expert" hat at times.

Keep doing what you are doing and if there is any further cause for concern, or you get worried, about anything, deal with at the time..

Good Luck!

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