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Are there any down sides to getting an ASD diagnosis?

(24 Posts)
sleepyhorse Sun 16-Feb-14 21:04:16

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 Sun 16-Feb-14 21:14:59

Yes I would go for it if the unit requires it

sleepyhorse Sun 16-Feb-14 21:26:06

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

Ineedmorepatience Sun 16-Feb-14 21:42:54

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. smile

zzzzz Sun 16-Feb-14 21:57:21

I think there are very few negatives to the correct dx. It doesn't sound like you are sure it's ASD though? (This is essentially where we were/are with ds1)

If he does have ASD, then the only major downs are if you are thinking about emigrating. Many countries won't accept any ASD people as immigrants.

adrianna1 Sun 16-Feb-14 22:16:29

Ignorant people...

My son most probably will get a diagnosis of autism... so we went to a doctor..he obviously say my DS notes, 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 Sun 16-Feb-14 22:33:40

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 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.

zzzzz Sun 16-Feb-14 23:14:35

Yes that's a good point. In my area there is no SALT if you have ASD

TigerLightBurning Sun 16-Feb-14 23:47:58

One minor bad point is holiday insurance is more expensive.

chocnomore Mon 17-Feb-14 07:59:50

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

CantQuiteBelieveIt Mon 17-Feb-14 08:07:48

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 Mon 17-Feb-14 09:30:19

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.

PolterGoose Mon 17-Feb-14 09:42:45

Message withdrawn at poster's request.

sleepyhorse Mon 17-Feb-14 11:05:37

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 Mon 17-Feb-14 11:28:25

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

zzzzz Mon 17-Feb-14 11:52:53

My experience is that the paediatrician is usually the best placed to dx regardless of the experience of the other professionals. It is totally inappropriate for them to be telling you to try and influence the dx process. angry

Educational provision is NOT based on dx AND THEY KNOW THAT. They need to document their opinions as to his EDUCATIONAL need to support you getting a statement in place. If it was me I would tell the paediatrician what they are suggesting and let him/her deal with them.

ASD is NOT a straight forward dx that anyone can spot. They can see traits, they can recognise behaviours, but to suggest that they can find cause is ridiculous. Did you know blind children stim in very similar ways to autistic children? The overlap of presentations of differences is massive.

I personally wouldn't accept a dx unless it was suggested by a developmental paediatrician from a country who's medical training I rated, backed up and evidenced by multi agency reports/assessment.

That said your situation sounds identical to ours a few years ago. Ds1 is now 8, and while I don't think his ASD is nearly as severe as his language disorder, I think it causes him more problems now than his language. I hope he will eventually get a dx of Severe Language disorder and HFA.

On a purely personal note, ds has come so far, in hind sight I would say focus on his happiness and well being more than the disability. No therapy can help if the child is miserable. ((And it is all much better than I thought it would be))

sleepyhorse Mon 17-Feb-14 18:17:58

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 Mon 17-Feb-14 18:20:57

That was supposed to say kids and CHAOS

zzzzz Mon 17-Feb-14 18:40:34

None! <falls over or comic effect>.

It's ridiculous really. He is not mildly effected. Our experience has been that he has become more ASDy as his language has improved. I too thought it out be the opposite.
He can make himself understood now. He can read, and do basic maths. I HE because school was becoming too difficult, but he will probably go back one day. He is very contrary now, which wasn't the vibe when he was younger. It is resolving with HE and kindness though.

I don't know what to suggest. My gut feeling is if you don't trust you Dr to give an accurate dx, why see him/her. I am pushing for a dx for ds1 because he is eight and we need to be able to protect him if he makes a mistake (ie pushes past someone/goes somewhere he's not allowed etc) and because I think it will help plan his future. I am not pushing (well nly a bit) for a particular dx.

sleepyhorse Mon 17-Feb-14 19:38:32

Zzzzz - what county are you in?

zzzzz Mon 17-Feb-14 20:12:10


sleepyhorse Mon 17-Feb-14 20:22:33

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

zzzzz Mon 17-Feb-14 20:31:14

Children's services are now "virgin". We have been assessed endlessly. (Ie yearly since about 3). We are about to start again.

To be fair ds was at a private school so dx wasn't something we needed to pursue. We had the assessments to rule out anything scary (eg brain tumours/degenerative stuff). At one point Aspergers with language disorder was muted.

Nothing helpful, no. I am quite able though so all is not lost and we paid for SALT/music therapy/riding/1:1TA etc when he was younger.

sleepyhorse Mon 17-Feb-14 22:54:08

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.

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