Ds has asd - should I get him "officially" diagnosed

[pinkyp]

I've "known" for while, school got him assessed by senco & said in her opinion he does have asd although mild. She also said I could go to the drs with him & go through the process of getting him officially diagnosed but this could take up to 18 months from start to finish.

Me & dh have been talking and don't know what to do. Dh thinks if we were to get him officially diagnosed we are "labelling him" and possibly spoiling his chances of employment when he's older. On the other hand It would be nice to be able to tell people he has it so they understand his behaviour isn't just naughty - although I don't want to be someone who uses it in every other sentence or as an excuse. It also might be "easier" school - wise, support etc.

Anyone have any advice they can give me? My mum insists he doesn't have it and that I'm making it all up - wasn't heard of in her day so she isn't supportive.

He is hard work lately. :(

How old is your DS?

I'm in a similar situation (DS is 4, just)

My opinion is the extra help now can't hinder, but doing nothing cannot help.

it won't spoil his chances of employment, becuase he wouldn't have to tell anyone. but you know there are companies that specifically like employing individuals with ASD because they are incredibly good at certain things.

personally we went down the route of getting a diagnosis for ds1 because we felt that although his current school were very good, we could see that in the future (at secondary level) it could be very different and it would be very hard to get the help he needs without beoing able to say "this is what he has, this is what he needs, here is the official word on it"

like you say, it makes it easier to explain to other people why certain behaviours occur as well.

Why would it spoil his chances of employment?

My son has Asperger's syndrome, he is 'labelled' but he feels it's helped him to understand why he sees the world in a slightly different light to the majority of people. He is 20 now and his Asperger's hasn't stopped him from getting any job. He has worked full time since he left college 2 years ago and is now in his dream job as a falconer.

He did find it useful to have a label at school, he needed extra time and some additional support put in place to help him with exams and he found the extra support useful at college. He went from very low predicted grades at college to getting top marks because of the help and understanding his label gave him.

I'm of the opinion that if someone's only barrier to employment would be a diagnosis, then they can just not disclose it and it won't have done any harm to have a diagnosis they no longer need.

If on the other hand the issues caused by the diagnosed condition are causing problems, then they'll be glad they have it.

So either way they'd be better off having a diagnosis in case they need to access support.

Obviously it is a personal choice, but having a diagnosis has helped us to access support for DS.

Couple of quick examples as I am just putting DD to bed.

He has had extra help and support and has a passport system whereby he holds up a card and leaves to go to the SNU if he needs to.

He has additional support in lessons where he needs it, and if necessary will have additional support (time during his GCSE's).

He's 5 in July. School have said they would provide support with or without a diagnosis it didn't matter to them if he didn't have one.
You'll have to excuse my lack of knowledge re the employment issues, I thought it would be something he'd have to disclose.

BTW, the SENCO can't assess for or dx ASD. She is not qualified to do so. She should not be saying anything like this. you

I agree that if you have concerns that your child might be on the Autistic Spectrum ask your GP to refer you to a Developmental Paediatrician who will be able to do all of the tests and assessments required for an Autism dx.

The Special Needs: Children board is much busier and is a great place to get support or information.

I think DS has chosen not to disclose his ASD on any application forms although he doesn't hide it either, he will mention it in conversation if he feels it is relevant but often it isn't.

She didn't asses for this, she assessed to see what extra support he currently has and any extra he needs at school. She also did say it was her opinion and she couldnt say for definite blah blah, but I know he has it wasn't shock news or anything.

Thanks for the link I'll go nosey

The school sound very supportive and understanding. You don't need to tell anyone if you don't need to, not even your Mum if she doesn't understand. It will help you to understand his behaviour and will help him get the support he needs throughout school. I know cases where by the time they go to secondary school you wouldn't really notice as they have been helped so much, but it is always good to have a dx for when he needs it. Some people will never understand his behaviour even with a 'label'.

our son will be 5 in august and he was dx aged 3.6. he has hfa. for us we needed a dx to access support services. without the dx we could not access help he needs now. we get help from speech therapy, occupational therapy and autism outreach. we also get DLA for ds. without sounding harsh i would say that its great that school will support but they may not always be so supportive, you may have bigger issues to deal with in the future and having the dx can only help. your son may need a statement. definately get a dx and talk to school about starting the process to apply for a statement.

The school might give him all the support he needs and even if they manage to all the way through with whatever staff changes might happen and the shortage of public money - which is only set to get worse, but you'll still have secondary school to deal with as well.

The way I look at my DS's diagnosis is that it's something we can use if we need to when someone isn't doing what they are supposed to.

By the way, it's really common for grandparents to disagree, I don't know whether it's a generational thing or just that they can't or don't want to see it - or maybe both? But so many parents seem to have similar issues with grandparents. My FIL was adamant that my DS was fine, until he got to about 13 and finally had to accept that he wasn't going to grow out of it.

Someone saying that they think someone has asd is not a diagnosis. It's a layman's opinion. The assessment process is lengthy and done by people who are qualified to do so. Even if this particular school agrees to give support - they can withdraw that, not give adequate support etc. And if/when he changes school -the new school may not agree to continue the support.

It's always a good thing, if you think there's something, if you can see it, to get an assessment. It's sad but true - if you want the support - you need the 'label'.

Many more things are available if you have the diagnosis, and they can make a world of difference.

The SENCo cannot diagnose ASC and is really irresponsible to suggest she can.
Even using terms like 'mild autism' is just dodgy. Take what she says with a large pinch of salt. Only a paediatrician or other suitably qualified medical doctor can diagnose.

I totally understand your fears about labels, OP, but in our experience, a diagnosis (and then getting a Statement) has been the best thing we ever did for our DS.

Can you try to see the "label" as a "signpost"?

My dd3 has a dx of ASD, it helps to signpost us and other people in the right direction to get her some support for her.

Your Ds might be able to get support right now but who knows what the future holds, your school could get a new HT or senco and things could change very rapidly.

Also the time before secondary goes so fast.

It is a scary thing to do but believe us when we say it was absolutely the right thing to do for our children.

Good luck whatever you decide.

If a child of mine had any condition, I would ALWAYS get that diagnosis in writing. Think of it a bit like carrying your umbrella out with you when you set off on a sunny morning. While it's sunny (all going well, school supportive) then you don't need to get the unbrella out, and no-one will know you have it with you (if you felt it was somehow a bad thing to have) however when that rain shower / storm suddenly appears (think change of SENCo or HT, or when you move to secondary) you actually have the umbrella there to use when you need it. At that point, it will take too long to go back home and get it (ask to be put on list to start investigations).
You will only be able to access certain services and support with a diagnosis. It may be, your ds won't need them, but it's a long wait to get the diagnosis at the time you think he might benefit, if you don't get it now.

Agree with all the answers here. My DS2 has Aspergers and we knew it was the right decision to get a formal diagnosis. Not just for while he's growing up but to help him his whole life. If he had a physical problem no-one would talk about labels - so it should be no different for a non physical problem.

Hi, I taught in mainstream for 5 years and have taught in a special school for the last 6. We now have over 50% asd children, including a few children who are academically able but have been 'socially' failed by mainstream schools, often resulting in frustrated and anxious behaviour by ks2. These children are at the 'aspergers' end of the spectrum, but I belive they may now be moving towards re-labelling aspergers as simply asd, high functioning. I believe that the 'label' is definately a sign post - if I know now a child is on the spectrum I instantly know what specific methods they might benefit from (I now also use these with other sen children and sort of wish they were accepted as appropriate for them too). It will also fast track access to any other support or provision in the future - for example 'early bird' courses are for parents of children with asd to attend with their teachers and there's a lot moving forward in using specific software with asd children such as iPads, with charities providing them etc. The early bird courses can help both parents and school to understand and support children if behaviour begins to appear 'naughty' using a range of methods and strategies, such as social stories or visual prompts.

A colleague's son, who she had always wondered about, recently really struggled at university with all his support systems gone and had to drop out. They finally decided to get a diagnosis and this has helped him to enroll on a course at a local college, with specific support from a tutor who specialises in supporting young adults post 18 in further education.

In terms of employment I really think with the right support and awareness as he grows up he won't struggle at all by the time he's 18. Better to get that support now as he grows rather than later when he's struggling.

Hope this helps :)

I'd go for a formal assessment as this may well "open doors" to additional help and support as he goes through his education.