Are there any down sides to getting an ASD diagnosis?

[sleepyhorse]

Hi there

Just wondering if there are any real negatives to getting an ASD diagnosis (apart from the obvious emotional cr*p of course!!). Basically ds is borderline ASD/language disorder. We have seen a really good mainstream with an ASD unit which I love because all the kids are integrated into mainstream regardless of their difficulties and go on ability so for reading etc. And they really help/support kids with social communication probs. The problem is you need a diagnosis of ASD so now we are in the process of pushing for a diagnosis from the pediatrician.

Am I doing the right thing??

[autumnsmum]

Yes I would go for it if the unit requires it

[sleepyhorse]

Ok cool. But what are the negatives to getting an ASD diagnosis?

[Ineedmorepatience]

We havent found any yet other than maybe the stupid faces some people pull when we tell them the Dd3 has a dx of Asd. Oh and the ones who say "well she was fine when I saw her"

Getting a dx for Dd3 who is 11 was absolutely the right thing to do, it has opened doors for her, not very wide we are still having to push for the right support but at least the doors are open.

She is more comfortable in her own skin too, she has known about her dx since she was 9 and I think finally understanding why she is different has helped her to just be who she is.

If I could have got that kind of school for her I would have done. Children with Asd really need to go to a school where all the staff "Get it"

Good luck what ever you decide.

[adrianna1]

Ignorant people...

My son most probably will get a diagnosis of autism... so we went to a doctor..he obviously say my DS notes, ....as I was asking about activities to help me son with his fine motor skills.... The doctor then began to tell me that I should use baking tins and to put buttons in them and then said " Children with autism like to arrange things in colour, so your DS will really like this activity".. My son does not arrange any thing in colours... I ignored her anyway and she then began to say other ignorant marks till I told her " You do know that all kids with autism are different..".

[sunnyfriday]

our LA has a pretty good S&L unit which does not admit
children with Asd. Asd provision on the other hand is dire round here.
Guess my point is that having an autism dx might open a door to e.g. asd units but closes the door to speech/language units..you said your ds has a language disorder so an asd d might have this implication for you.

I would push for a dx that gives you the best provision iyswim.

[TigerLightBurning]

One minor bad point is holiday insurance is more expensive.

[chocnomore]

really, tiger? I am sure we did not pay more post dx.

[CantQuiteBelieveIt]

Yes you do have to declare asd when taking out holiday insurance.

Only cost us £2 more for a trip to the States but I'm still seething at the injustice. Ds1 is easy, placid, and wouldn't hurt a fly yet he's been deemed an extra liability just by dint of a diagnosis

[salondon]

The only disadvantage I have experienced is that once you tell doctors & educators in UK that your child has ASD they pretty much write your child off.

Before my daughter had the diagnosis and we were still investigating, we were able to get a lot of blood and urine tests done using BUPA and NHS.. not anymore.

The other issue also is that they give you a diagnosis of ASD and expect you to leave them alone. they wont look at SPD/ADHD/ADD/GDD etc with much ease.

[sleepyhorse]

Poltergoose and zzzzzzz.... Just so torn - school and the EP think he does have ASD but the pediatrician is adamant he doesn't (she agrees 100% with school that he does have social communication difficulties but thinks it stems from his severe language disorder and not ASD) so what school are telling me is that somehow I need to convince the pediatrician that he does have ASD, that I need to put the pressure on. So that if I can get his diagnosis then can get him into this school with ASD unit which school feel will be much better for him. He currently goes to a school with a Speech and language ARP so these teachers obviously have expertise with special needs. Just don't know who I should be listening to??

[Hanginginthere123]

You can ask for a second opinion and get a referral to another paediatrician ( - one who had a specialism in developmental issues)

[sleepyhorse]

Zzzzz that's really interesting what you just said, I remember reading some of your posts in the past and often thought our ds's sound quite similar. I guess when a child does have a severe language disorder and that it is initially their primary need it becomes so difficult to know if the ASD traits are as a result of the language impairment or in fact ASD.

I have always questioned if he has ASD though. And now that his language is coming on I kind of expected these traits to tone down. He is still displaying rather odd behaviours which just makes me more convinced. I am no expert but for example his constant raspberry blowing (which I'm guessing is a stim) , he is quite sensory so very fussy with foods and what clothes he is wearing. And whilst he does play with other kids he doesn't know how to behave always so today on a play date he told another 5 year old boy that he loves him and it was completely out of context, it was very random! So I can kind of see where the EP and school are coming from. Apparently last week when the EP asked him about some maths task he was doing in class he started going on about angry birds. He is fine whilst he is in the ARP as it's much quieter and less hectic but school are saying that he is struggling in the afternoons one he is placed in the big MS class with all the kids and chos etc. Surely these are all strong signs?

I think I'm going to have to get another NHS pediatrician to go into school for a 2nd opinion. The EP, current school and new (potential) school with ASD unit we visited all say he won't be accepted for a place unless he has a dx of ASD. He currently has a statement for speech, language and communication. So ZZZZZ - what dx does your ds currently have?

[sleepyhorse]

That was supposed to say kids and CHAOS

[sleepyhorse]

Zzzzz - what county are you in?

[sleepyhorse]

And what are the professionals saying? Have you not been offered any help?

[sleepyhorse]

So I take it the pediatrician etc was unable to identify exactly what's wrong with your ds? Sounds like you did all the right things for him from an early age and not relied on the LA's, by getting him lots of therapies. Like you mentioned earlier it's so important that they are happy and my ds really is unhappy at school, he wakes up sometimes in the middle of the night begging me not to send him to school. Another reason I'm trying to find a more suitable school for him.