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Any disadvantages on an asd diagnosis?

58 replies

wishiwasonthebeach · 17/08/2015 15:33

For a 6 year old child with mild autism. He's doing fine at school but socially he is very immature and doesn't read social cues very well.
What are the advantages and disadvantages of a formal diagnosis?

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wishiwasonthebeach · 17/08/2015 22:27

Noble, are those support sessions compulsory or optional?

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wishiwasonthebeach · 17/08/2015 22:29

Hedge, that's strange indeed.

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wishiwasonthebeach · 17/08/2015 22:31

Only, what happen to your Dds, was it it the learning or social interaction?

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wishiwasonthebeach · 17/08/2015 22:32

I really don't know what to do, and I need to make a decision soon or he,ll be discharged ????

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Hedgehogsdontbite · 17/08/2015 22:50

I'd want to know. Good or bad, you can only deal with what may arise if you know exactly what you're dealing with. Especially as you head into teenage years, where the gap between gap between autistic youngsters and their peers opens up like a gaping chasm. There are downsides, but in my experience they are a drop in the ocean compared to the advantages of certainty.

mummytime · 17/08/2015 22:55

I would get the diagnosis - it could take 2 years or so to get it later, and by then he could well have had a very tough time.

He is 6, and is coping well. Unfortunately the gaps in social understanding can widen as he gets older, or even widen for a bit until he gets help to negotiate the changes in social expectations.

My DD has a diagnosis, and the only reason I can see there being any issue with her having a driving license is if she is unable to cope with frustrations whilst driving. I believe she will have strategies in place to cope, and has already had a driving lesson in a safe environment (she is under 6). However if she couldn't handle the stress because of her ASD - then she shouldn't drive.

She doesn't cost the state much at present - so if she wanted to emigrate to Canada it would be hard for them to refuse, which is the only other real issue I've known someone worry about.

A friends son has recently done a short "experience" with the Army, so I'm not sure if there is change happening there too.

Personally I'd rather my DD had a ASD diagnosis than be labeled as "anti-social", "violent", or start to refuse school. It also helps school spot potential bullying, something she doesn't always spot at first.

wishiwasonthebeach · 17/08/2015 23:20

Thank you all for your posts, it has helped me immensely. I'm torn to accept the formal dx

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noblegiraffe · 17/08/2015 23:28

Any support offered is optional.

wishiwasonthebeach · 17/08/2015 23:29

Thanks Noble

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DopeyDawg · 17/08/2015 23:49

I didn't know that about the Army.
Is it all the Armed Forces?
Silly really, as my ASD son wouldn't dream of 'breaking the rules' and would be the Armed Forces dream recruit.
Didn't know that about other countries, either?

zzzzz · 18/08/2015 00:34

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zzzzz · 18/08/2015 00:35

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Banananutella · 18/08/2015 05:25

Had a family member who was very anti diagnosis and really confused things but in the end we went for it. Which is good because he did need help and the diagnosis allowed school to apply for funds to help pay for extra staff to do this

mummytime · 18/08/2015 05:29

Canada can only refuse if the child is going to be an excessive burden.
BUT when I was reading about it one family with a very severely disabled child had managed to argue and win their case due to their financial resources. I don't think needing TA support would be upheld in court.

onlyoneboot · 18/08/2015 08:39

It was the social interaction mainly with my dds and I would never have believed it because they were happy girls up til then.

And the learning environment, secondary is so much busier, noisier and dd1 was punished for her difficulties rather than understood. We went down the all too common path of self harm, school refusal.

Your son might cruise through, be might need help but far better to be able to access help as soon it's needed imo.

mjmooseface · 18/08/2015 09:30

This has been interesting to read. I had concerns about my DS from the age of about 18 months old, which is when I started investigating his development with HV and then SALT and finally paediatrician. He got his ASD diagnosis at age 28 months old. It never even crossed my mind that I could refuse a formal diagnosis. Why would it? But that might be because my DS' ASD is quite noticeable and severe compared to how your DS presents at the moment. The paed had absolutely no doubt after 1 hour with him, that he has ASD. I think I'm just the opposite. I'm now going down my own route of investigation to a diagnosis for me and I've discussed with DH about having his ASD diagnosis formalised.

For us, a dx means that nursery could apply for extra funding to help DS and have access to information and training to help his learning environment, and we can work on an EHCP for him in the future, too. A dx can only serve to help your child. And like a pp has said, the dx may change and develop as your child gets older, but drs won't diagnose unless they are certain your child meets a certain criteria.

I really would urge you to accept a diagnosis. It will help so much in the long run. :)

zzzzz · 18/08/2015 09:37

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wishiwasonthebeach · 18/08/2015 10:15

Mj, that's exactly it. If his traits were obvious and if we were the ones chasing the dx I would feel differently.. But, as ridiculous and as in denial as I might sound I think that they might have got it wrong. It can happen. The dx is not as straight forward as diabetes or asthma.

www.vision.org/visionmedia/Interview-Gnaulati-ADHD-Autism-Overdiagnosis-85775.aspx

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wishiwasonthebeach · 18/08/2015 10:21

Here's the link again. It didn't work on the app.
www.vision.org/visionmedia/Interview-Gnaulati-ADHD-Autism-Overdiagnosis-85775.aspx

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noblegiraffe · 18/08/2015 10:53

It's worth bearing in mind that those articles relate to the U.S. where the healthcare system is very different to here. Also, your child isn't 2, and a lot of the article is talking about very early misdiagnosis.

Has your DS got any other issues apart from social interaction? Food issues? Anxiety about new things? Does he get overwhelmed in large, busy environments? Does he seem sensitive? Does he have issues with social boundaries/inappropriate contact?

zzzzz · 18/08/2015 15:35

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mjmooseface · 18/08/2015 16:05

Could you get a second opinion on the dx wish? Go down a private route or see a different paed to be sure and to talk over your concerns and to be reassessed?

adrianna22 · 18/08/2015 16:08

Well I could tell you my experience, but this also can include why it's helpful to get a diagnosis for your child (whatever that condition is).

In all honesty though, reading your question, I had to think long and hard why having your child diagnosed is an advantage. I must say, if my child was diagnosed and I wasn't being a proactive parent about what his needs, I believe my DS would of been left dead in the system, or it would of been too late to get the need he requires.

That's one thing, in my borough, a diagnosis doesn't really mean anything, it's about what your child NEEDS. If I didn't complain and shout at the professionals that my DS needs help, they wouldn't of done anything with him.

If you want your DS to go to a specialised special school or specialist unit, you need a diagnosis, otherwise your child will end up at a special school that takes all needs of children.

Once you have an autism diagnosis, they would most very likely not take into account of any other or possible conditions your DS may have. Everything is blamed on the autism. For example, I suspected DS must of had something else going on besides the autism, in his case, the autism didn't really explain everything. The professionals also suspect this too, but instead they gave him an additional diagnosis of Moderate learning difficulties. I thought DS may have had something called Verbal dyspraxia, but the Autism team didn't want to hear of it. So I went to a private speech and language therapist who actually assessed DS and concluded that he did have verbal dyspraxia and that you can have Autism and verbal dyspraxia.

Due to me appealing his statement, having saw the various of independent professionals, the specialised SALT who assessed DS for tribunal reasons, concluded that he indeed does have verbal dyspraxia as well as oral motor dyspraxia. DS has been recently seen by the NHS Nuffield speech centre and the team said when assessing DS for 5 mins, they already knew he had the dyspraxia condition and the head of the centre also told me that you can indeed have dyspraxia as well as ASD. Oh and funny enough, when DS was assessed by an educational psychologist, he concluded that DS most definitely did not have moderate learning difficulties and came out as high average cognitive ability. So there is a danger of misdiagnosis of very young children.

I must say, with a diagnosis you are referred to a various of sources, that you would not get if you didn't have a diagnosis. eg. Autism outreach team etc.

adrianna22 · 18/08/2015 16:23

But please if you suspect your DS may have something, even if it's not autism. Get him assessed. I have never understood the parents who have delayed their children getting diagnosed, if they already suspect something.

Yes your DS may be fine now, but his needs may change and actually get worse and before you know it, its' too late. My DS is in reception, and he was actually fine in his mainstream school, though over time I saw little cracks, he wasn't getting enough support and I know that due to his severe language difficulties, he would not progress with the rest of his class. So I pushed for him to go into a specialist school, (his 5) and he will be going this September coming.

Early intervention is best.