pros and cons of DX

[Abby]

I am trying to get a referral back to camhs,they were less than helpful last year and gave us a few parenting session(joke) and said he didnt fit the criteria for AS as he made eye contact and was keen to interact and looked at me before answering their questions,which seemed ridiculous to me but there you go,and school gave him a good report,even though they complained about him to my face,now we have moved and he is struggling at new school,his behaviour has worsened and he isnt coping well

I want to get the help he needs and i do think he has some AS traits but am worried that a DX wont help him in the long run

When he is an adult how will it effect him? will he have to tell his employers if he does get a DX of AS? will he have to let DVLA know if he wants to learn to drive? will people see him through different eyes after a DX?

I know he hasnt got a dx yet,but if he does,im worried that things will change,i am not just thinking of us as a family,but the future for my son

I would really appreciate some advice,there must be good and bad points for getting a DX and i am not just talking immediate effects like with school

I expect you have all been through this dilema which is why im asking and i am probably worrying as i have a docs appointment tomorrow to get a referral to camhs

thanks

Edited May 8, 2008 by Abby

[jo jones]

hi abby we had the same probs as you,, we have fough for 2 years now as school say he is fine, but we pushed for salt and o/t referrals and only then did we finally get sum answers,,my paed he sees a the hosp is better than the pad team he is under,, they didnt believe that he had sensory dysfunction until i showed her the sensory profile,,, paed is now also lookin at other things that may indicate he is on the spectrum, i think dx can help as support will then become available for u all,, as so far because of behavioural issues we had sure start to work with us for 6 months,, and we now have different strategies in place to deal with them which in turn has made life easier,,, we wouldnt have had that support without referrals and so on ,,i hope this helps,,,

[Tally]

Hi Abby,

 

I would say that the benefits far outweigh the disadvantages.

 

He should tell his employers if he is diagnosed with AS. It can be considered Gross Misconduct if you fail to reveal a medical condition which may affect your ability to do your job. However, most employers do not have access to your medical history, and there is no way they could find out. Even so, I think honesty is the best policy. If he later required adjustments, he would be unable to ask for them. Without the right support now, he may never be in a position to seek employment anyway. Even with the right support, he may be unable to work, and the diagnosis would be helpful for applying for benefits. A diagnosis could help him access supported employment schemes.

 

You are supposed to inform the DVLA if you have a diagnosis of AS. If they have concerns, they may ask for a Dr's note saying he is fit to drive before they will issue a driving license. I have never heard of a person having to do this, but if the Dr feels he is not fit to drive, then maybe it is best he doesn't anyway. I have also never heard of it affecting the cost of motoring insurance.

 

The diagnosis may affect the way people see him. But it sounds like his behaviour is already affecting the way his school see him. A diagnosis may not change that, but it could help you access the right support for him in school - whatever their views, they have to comply with a Statement anyway.

 

A diagnosis may help him to understand himself and feel better about himself. I went undiagnosed until adulthood, and spent most of my life wondering about a lot of things. My diagnosis has helped me to understand why I struggled with so many things, and to forgive myself for the things I failed at. I know that some people treat me differently because of my diagnosis, but people always treated me differently anyway because they thought I was weird.

[mossgrove]

As with a lot of things it is a personal decison whether to seek a diagnosis. But you do need to remember that is the decision you are taking, not whether or not your son is going to have AS when he is older, If he has AS now he will have it when he is older, it is not something you grow out of. If he does have AS he will know he is different from other children, and as he gets older he will be entitled to an explanation why.

 

I am sorry if this sounds patronising, but when we were making the same decison we had many of the same thoughts. Looking back I now realise I was subconciously hoping that if he stayed in mainstream school and made it through to the end in one piece he would somehow not have AS after all and could enter his adult life without being bogged down by a disability.

 

Looking back on it from 4/5 years on I can see that I was wrong as his AS is with him for keeps, and we need to deal with that in the best possible way for him. In his case this means a place in a Special School where he has been for three years and is thriving. It is only through a diagnosis that we have been able to unlock the support he needs. If as he gets older you find that (for example) mainstream school isn't working out for him, you will be in for a rough ride if you have to start the diagnostic process from then and see it through to conclusion before getting any help for him.

 

Simon

[Karen A]

Hi Abby.

I do not know how old your child is.It is worth bearing in mind that even if a child has coped very well during nursery and lower primary the situation can change as they get older.Ben has DCD [dyspraxia ] with Social Communication Difficulties [he displays some AS features but the professionals have not been able to agree on a clear Dx as the situation is very complex].Ben does get support from Autism outreach though.

When Ben was in nursery and lower primary he was not considered to need any support because he was seen as very bright with a bit of an atitude. ...but was not seen as having any difficulties.As Ben progressed through primary school the difference between him and his peers socialy and emotionaly widened.He became very anxious and displayed challenging behaviour such that exclusion was a possibility.We obtained a Camhs assessment and applied for a Statutary Assessment of SEN which we obtained.

Having been on the Forum a while it appears that our situation is not unusual.The gap between children with AS and their peers often widens as they progress through school.

The other thing that may be worth investigating is whether the people within Camhs who did the original assessment were the specialist team in your area with responsibility for Dx ASD.If not it may be worth asking your GP for a referal....that team may be within learning disabilities rather than Camhs but it varies depending on local PCT policy and funding agreements.Karen.

[LizK]

If he has AS he has AS regardless of whether he has a diagnosis or not. The underlying condition is still there, just might not be acknowledged. Not diagnosing AS that is present won't make it go away iyswim! I think diagnosis is generally a good thing, thinks inevitably do change but hopefully for the better. It enables more understanding and support and planning for the future. Better to be 'labelled' with AS than incorrectly labelled as 'naughty' 'rude' 'odd'. The only situation where I have heard of a diagnosis being negative is a young man who wanted to be a fighter pilot. His functioning had largely improved as he got older and he desperately wanted to fly. However his diagnosis precluded him from joining the RAF despite the fact that functionally he was more than able.

 

Lx

[Abby]

Thanks for all replies

We have just come back from the doc and he said we should be seeing the school nurse as she will have links with everyone,rather than senco,at least initially anyway.

We cant see the senco atm because they are doing sats at school (my son is 9 and isnt doing sats this year) and are too busy to give us their full attention so they said they will see us in a couple of weeks!

My husband phoned the school nurse for our area and spoke to her secretary who said she will call us back but said that camhs is very stretched in this area and we will be in for a long wait

Our doc is however,referring us to camhs and did listen to our concerns about our son

Just wanted to say that i am not naive enough to think that,if he does have AS ,that he will outgrow it,i know its for life and theres no cure,but what i meant was,sometimes its better not knowing than being made to feel different with a DX of something "wrong" with you,im not tallking about AS specifically here,just in general,sometimes its better to be blissfully unaware,but i do also now that he does need help.i just wanted some views is all.

I think i am doing the right thing anyway purely because he is struggling in school and it may be that as he gets older his "differences" are more noticable and pronounced.I often feeel like taking him out of school,to protect him as his mum,but i know it wouldnt be that simple,again,there are fors and againsts doing that too.

So it looks like we are in for the waiting game now.

[oxgirl]

Hi Abby, how're you doing?

 

sometimes its better not knowing than being made to feel different with a DX of something "wrong" with you,im not tallking about AS specifically here,just in general,sometimes its better to be blissfully unaware

 

I think it's very often the case that young people do know that there is something different about them and are generally not blissfully unaware of their difficulties. They might not be able to put a name to what is different, but they can often feel different and sometimes knowing why and getting a reason for why they feel that way can be a big relief. I guess many AS youngsters go through childhood wondering why they're struggling or finding things difficult and it can sometimes be helpful to have it confirmed for them, that there is a reason for it and they can often then come to understand and accept themselves more fully. I think if it were a case of being blissfully unaware of their differences and being happy with who they are, then that's one thing, but I'm not sure that that is often the case.

 

Take care. <'> <'>

 

~ Mel ~

[cmuir]

Hi

 

My son is 6 and has AS. He was diagnosed at 4.5 with AS. I have to say until that point my husband and I were banging our heads against a brick wall ? nothing was happening other than being passed from pillar to post. I was stunned when I asked the question on the day his diagnosis was confirmed "what happens now?" for the consultant to reel off a list of this and that. Whilst for example I did manage to get DLA pre-diagnosis, there appears to be a mixed bag of how organisations/healthcare and education professionals view things. My experience has been that very little happened in terms of receiving support for my son until diagnosed. Whilst I believe irrespective of receiving a diagnosis that a child's needs/difficulties should be acknowledged and supported, I personally believe that a formal diagnosis adds weight. As for what happens in adulthood, I don't know.

 

Best wishes.

 

Caroline.

[Canopus]

He should tell his employers if he is diagnosed with AS. It can be considered Gross Misconduct if you fail to reveal a medical condition which may affect your ability to do your job. However, most employers do not have access to your medical history, and there is no way they could find out. Even so, I think honesty is the best policy. If he later required adjustments, he would be unable to ask for them. Without the right support now, he may never be in a position to seek employment anyway. Even with the right support, he may be unable to work, and the diagnosis would be helpful for applying for benefits. A diagnosis could help him access supported employment schemes.

 

What happens if somebody starts a job unaware that they have AS and have never heard of the condition; then a year later they start experiencing problems resulting from AS? They then find out about AS and think they have got it. Will it be easy for their boss to sack them?

 

Telling a private sector employer about a disability when applying for a job is a sure way of not getting the job!

[sadie]

Like you I was concerned about implications of getting a DX. All, family and professionals,accepted that DD had problems and she was getting help (in that dd got place at special school). However When probs developed in our family life we could get no

help whatsoever from social services ! Even CAMHS support for social services was to no avail. But as soon as got DX social services offered home from home respite. Hope that you will never really need soc services but if you do a DX wd help.

 

Also,and don't take this amiss, yr son is only 7.. Don't worry TOO much about the future; you' and yr son have at least ten years of living before you reach there, and the future whatever it holds WILL take care of itself in one way or another.

 

PS Looking back on yr old posts I see my DD shares yr sisters trait : can't ask for things in a shop( or anywhere else)Is this a common trait?.. maybe I'll start a new thread

[pearl]

Take heart. My lad was dx'd around 5. He is now 18 & working successfully in the public sector. He disclosed from the start, & if anything, his employers tend to celebrate his AS - he was recently a Positive Role Model for their Valued in Public Day, about attracting disabled peeps into public sector work.

 

Also, we didnt know he had to inform the DVLA about his AS, so he didnt, & he passed his test first time.

 

Maybe he just got lucky, but the future is not always gloomy. <'>

[Tally]

What happens if somebody starts a job unaware that they have AS and have never heard of the condition; then a year later they start experiencing problems resulting from AS? They then find out about AS and think they have got it. Will it be easy for their boss to sack them?

 

Telling a private sector employer about a disability when applying for a job is a sure way of not getting the job!

 

No, you cannot be sacked for not revealing a condition you didn't know you had. If you did require adjustments, they might ask why you didn't reveal your diagnosis sooner. Not having a diagnosis would be considered a perfectly reasonable excuse.

[hev]

Take heart. My lad was dx'd around 5. He is now 18 & working successfully in the public sector. He disclosed from the start, & if anything, his employers tend to celebrate his AS - he was recently a Positive Role Model for their Valued in Public Day, about attracting disabled peeps into public sector work.

 

Also, we didnt know he had to inform the DVLA about his AS, so he didnt, & he passed his test first time.

 

Maybe he just got lucky, but the future is not always gloomy. <'>

i love hearing about jp and the others who are doing well