Pros and cons of diagnosis

[rag31]

I am still wondering about going for a diagnosis for my 3yo. I am trying to weigh up the pros and cons of seeking a diagnosis for him.

 

He won't go to school so he won't need an SEN or any help there and I would like to know how a diagnosis will help us and him in other ways. Are there other services or pros that only come with an official diagnosis?

 

I don't know if there are or not. Do health care professionals think you are weird for not getting one? We see various health professionals for his other condition and the SALT has recommended we see a community paediatrician and I wonder how they will react if he obviously has an ASD yet we don't seek any kind of diagnosis.

 

Also, if we can get DLA is it helpful to have a diagnosis or does it make no difference?

 

So, information on the positives and negatives of seeking a diagnosis would be most appreciated.

 

Thanks,

Becky

Edited September 2, 2009 by rag31

[JsMum]

I can share with you the damage it does to a child who has an ASD and doesnt get a dx.

 

My son has now only just got a full speech and language therapy programme, a whole social and communication section in his statement and a lot more needs regonised since going to tribunal to get him an education to meet his special needs which are complex and many different disorders, it is only now that things are addressed and met.

 

I would say it is imperitive to have a childs special needs recognised as early as it is aparrent and obvous and support in place straight away without ££££ signs rolling in the authorities eyes,

 

my son has additional mental health disorders and I feel strongly its because he was not getting his needs met and had undx ASD it caused untollerable stress and anxiety, weekly crisis, and total meltdowns where regular, so the sooner you can get a child assessed and dx the best for support, understanding and looking at resources you can access.

 

I personally wished we had of got dx sooner, Js were aparent at 3yrs old, but he is nearly 13 now and its only just recently all his special needs have been met. J has recieved DLA from age 5 without a dx but over the years evidence has been given and reports added and as dx/s came added over the years. So yes you can recieve DLA without DX but you have to prove his needs are over and above that of a child without a disability, DLA goes by NEEDS not DX.

 

National Autistic Society have a lot of litriture on ASD and behaviour/communication/social support as well as information on parents who home ed, or are not in school, or nursery whos children have ASDs.

 

I personally would be seeking for a dx and getting the right support as early as possible because what you want for them you have to fight for it because there is limited places there like gold dust especially now there is a great thing called inclusion.

 

JsMum xxxx

 

Edited September 2, 2009 by JsMum

[Tally]

Theoretically, you should be able to apply for DLA without a diagnosis, because it is about specific difficulties the child has. However, it can be easier with a diagnosis. Also, the diagnostic assessments will provide evidence for all the difficulties you mention in your claim.

[LicklePaulie]

diagnostic assessments will provide evidence for all the difficulties you mention in your claim.

I think this is the important bit - not just for DLA but when seeking ANY form of statutory assistance. It simply adds weight to claims as pre-existing and ongoing issues, rather than having to prove current concerns and then to provide evidence that they are ongoing or indeed worsening...

 

[ScienceGeek]

Although DLA doesn't require a formal diagnosis it does add weight and evidence to it and they are more likely to take it seriously. Plus it opens other doorways in terms of health and social services (well the potential at least if things are organised properly etc). Plus personally it was good to know for definite from a specialist rather than speculation in my own mind as such.

[Cat]

 

Do you mean that you will not be sending your child to school at all because you are going to home educate him? I know that there are some parents who home educate who do not seek a formal diagnosis because they do not believe they would gain anything from it. Looking at the bigger picture if your son is autistic he will grow up to be an autistic adult who might at some point in his life need support or service provision. Without the right diagnosis he might not be able to access support or provision. There is very little on offer to adults at the moment but hopefully that is going to change in the very near future. Even if you are not intending to send your son to school you could still access provision like speech and language and OT. You do not have to get an NHS diagnosis some parents opt for a private diagnosis as well as paying private therapies.

 

If you are not intending to home educate then I would certainly go for the diagnosis because without it your child will not get the kind of support or provision that he requires. Even with the diagnosis it can still be a battle for both. Also if you are being advised to get a diagnosis by health care professionals and refuse and you are planning to send your son to school at some point the health professionals might (and it is a might) question if you are acting in the best interests of your child.

 

Cat

Edited September 3, 2009 by Cat

[JsMum]

I was thinking today about your question again, and another way dx helps too is you know exactly what it is that the child has, also you can work towards getting the child to understand their dx, one of the hardest things for J has been he has always felt different to other children, that he never really fits in, or excepted, but now he understands more about his special needs he is feeling a lot more comfortable about himself, so preparation in the family understanding Autism also helps to support the family as a whole.

 

JsMum

xxxxx

 

Edited September 3, 2009 by JsMum

[rag31]

Thankyou for all your replies.

 

I do home educate my children, so that is why he won't be going to school. :-)

 

It seems there is no negative to diagnosis as far as everyone here is concerned. Another question - where can you go for a private assessment?

 

Thanks,

Becky

[JsMum]

Hi, you can contact NAS who have a list of private routes, many suggest private dx arent excepted by authorities but they are counted in tribunals and panels so do still look into though its expensive, Ring NAS they will help you further.

 

JsMumxx