A register of adults with AS and ASD

[Canopus]

Is there a national register of adults with AS and ASD?

[Mumble]

No - see this from the NAS:

 

How many have AS?

 

"There is no central register of everyone who has autism"

[Guest Lya of the Nox]

daft Q but why would it be needed?

and if there was could people use it against thos with AS

?

x

[Mumble]

daft Q but why would it be needed?

and if there was could people use it against thos with AS

?

x

I totally agree and I think that is where Canopus is approaching this from - that if there were such a list, employers could use it against people, particularly those who chose not to disclose on applying for a position. I assume it would be illegal to collect or store such a list anyway - imagine the uproar for instance if it was suggested that there be a list (and particularly a publicly obtainable list) of everyone who is HIV-positive - this has to be seen in the same way.

 

What's interesting is that the NAS bring this up in saying it's why they can't say how many people are diagnosed ASD. That is wrong - people can disclose numbers without names and some sort of prevelance record could be set up with qualified/registered psychiartrists completing a simple census of number of people they have diagnosed in the last 12 months.

[Canopus]

I totally agree and I think that is where Canopus is approaching this from - that if there were such a list, employers could use it against people, particularly those who chose not to disclose on applying for a position. I assume it would be illegal to collect or store such a list anyway - imagine the uproar for instance if it was suggested that there be a list (and particularly a publicly obtainable list) of everyone who is HIV-positive - this has to be seen in the same way.

 

I don't think a national register of people with AS will be illegal providing inclusion of details is done with the consent of the individual. What happens with people officially diagnosed with AS?

 

There are serious consequences if the list falls into the wrong hands such as insurance companies. On the other hand, there will be advantages of having a national list of people with AS providing access is closely controlled.

[cmuir]

I can see what the pros and cons of having such a register would be. I think first and foremost it would be interesting/educational to establish numbers. If there were a register, it would have to be a confidential one - one which couldn't be accessed by anyone other than health professionals.

 

Raises another question - if you have a formal diagnosis, isn't that normally info held on eg GPs records. Can prospective employers find out if someone has an ASD eg when seeking health reference just before employing someone or is that something which isn't disclosed? Just curious.

 

Caroline.

[Mumble]

My diagnosis is on my GP records - I need this because a letter has to come from the GP for things like DSA. In the past when jobs have required medicals this has come after I've been employed, but I haven't had a job since I got my diagnosis (I've been a student) so I don't know what the impact would be.

[Guest Lya of the Nox]

but a register such as this then is on the fine line surely, of what is deemed as acceptable and what is not?

how many peeps are muddling along nicely in their life with no knowledge of that fact that they may be AS, and if it is foun out does it make any difference,

but this goes along with telling insurance companies about our kids, it is as if cos they are AS they are more of a risk, mine has never ever been a risk to anyone else, and i worry that something like this can cause more discrimination, and with more kids being diagnosed?

[Canopus]

A register could be useful for the provision of services or certain types of employment. If the register was created then there would be a question of who would be responsible for holding it.

 

Another thing I had in mind was a system of registering local AS and ASD support groups. At the moment most are independent concerns. Asperger Technical has a collection of sensitive information and a decision has been made that it will only be made available via AS support groups to reduce the likelihood of it ending up in the hands of undesirable people and organisations. The problem is that AS support groups can be run by anyone and there is no real code of practice to verify they are run by reputable individuals.

[Tally]

If you have any kind of information about people, you need to check you're complying with the Data Protection Act, and that anyone you share the information with is doing likewise.

[Laz]

To build on your point canopus about the access to sensative AS data to support groups you might be familair with a character who joined a welsh NAS group. He actually had convictions for sexual offences claimed to have aspergers diagnosis (all happened in ireland) and under the guise of research tried to obtain naked pictures of autistic children from the support group. A suspicious parent reported him and he went on the run back to Ireland were he was arrested (I think?) Its on the BBC website somewhere.

 

Also another problem with having that kind of data open is you have people who say they are "Self-Diagnosed" with aspergers. While im sure there are people who are genuine in their intentions who for whatever reason havent pursued an asperger diagnosis its a great way for any person with dark intents to infiltrate an asperger support group.

 

Sheffield is quite unique in that it has a learning disability case register. Its been a fantastic resource to track research and monitor trends in the local population. It also helped the local services plan for future needs like for example that there are going to be quite a significant amount of people in the learning disability population who will have quite profound learning disabilities compared to the current adult population because more are found to be surving to the age of 18 and over with improved medical technology

 

From a scientific study/audit/resource management point of view its a good idea. But then your assuming there is the will in government to implement a national asperger framework.

 

However. We will soon have a study coming out from Sheffield Hallam university that you may find a foundation on putting an argument backed with evidence together.