Cynulliad Cenedlaethol Cymru

National Assembly for Wales

Bil Awtistiaeth (Cymru) drafft

Draft Autism (Wales) Bill

Arolwg Ar-lein DAB2

Online Survey DAB2

Ymateb gan Cyfrannog ar-lein 2

Evidence from Online Participant 2

Please refer to questions in the Online Survey.

Question

Answer

01

Yes

This is an autism bill, not an ADHD bill, not a child mental health bill, not a PDA bill.  There must be a robust definition or it is meaningless.

02

No

Is this a neurodevelopmentla bill or an autism bill.  If it's the former, say so, re-badge it as a more general bill and move on.

03

Yes

They are funded and can be held accountable.  You can't hold 3rd sector organisations like the NAS accountable.  However fluffy and nice they may seem when an adult or a child isn't getting the service they require how do you hold them to account?  Do not confuse this with a grab for funding from the 3rd sector.

04

No

Either they will do it, or they won't.   Extra power won't change that.

05

They've written one,  we've had one since 2008,  6 months to tweak it is plenty. Can't write it before as the act may change as it passes through the Senedd.

06

3 months to write guidance, that again has already been written is plenty.  But it isn't possible in advance.

07

Seems pretty quick for a law,  a year is more typical. But this won't be one that makes any far reaching changes that will take time to prepare for,  this is a purely political posturing exercise.

08

Clinicians are bound by clinical guidance, this must be in harmony with legislative guidance.

09

No

The 2 are unconnected.  If a person has needs,  diagnosis or not, they should get an assessment.  Going down the road of "you get an assessment after diagnosis" in practice will mean that you NEED a diagnosis to get an assessment.  This is a horrible seriously retrograde step.  It also makes the assumption that all people who are diagnosed with the condition of autism require support from social services which is arrant nonsense.  And does this really mean from Learning Disability who are entirely the wrong  team and are ill equipped to work with the majority of adults with autism who do not have a learning disabilty.

10

No

Nice guidance CG128 already covers this,  The list is more extensive e.g. under 19s list is.

In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a: paediatrician and/or child and adolescent psychiatrist

speech and language therapist

clinical and/or educational psychologist. [2011]

1.1.4 The autism team should either include or have regular access to the following professionals if they are not already in the team:

paediatrician or paediatric neurologist

child and adolescent psychiatrist

educational psychologist

clinical psychologist

occupational therapist. [2011]

1.1.5 Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment. For example, a specialist health visitor or nurse, specialist teacher or social worker. [2011]

11

Follow NICE guidance,  that's what it is there for !!!!

12

This assumes that all people with autism "Have a need"  which is simply untrue. What would stop them getting a service is that they don't need a service.   People with a high IQ will be turned away from the services for people with a low IQ.  It is just the same as being turned away from services for the blind or wheelchair users or serious mental health.  People with autism MUST not be shoehorned in to unsuitable services.

13

No

14

Would you like us to wear little stars on our coats as well ????? 

Wouldn't want you to miss us in a  crowd,  perhaps teh littel arm bands should be made compulsory.

"Can you see me,  I'm wearing my band ?"

How dare you dehumanise us in this way !!!!!!!

15

Not sure

Stop,  just stop,  there is no need for this and I consider it a serious infringement of my human rights

We have a right to be anonymous if we choose and I choose to exercise taht right.  Just let me live in what you clearly think of as your world.  Just so you know, it's mine as well.

16

No

No No No Mind your own business.

Are you thinking of re-naming this the "Big Brother" act.

We want to know who you are, where you are and what you are doing. 

This is hideous.

17

Not sure

What does the evidence say. 

This assumes that people are unaware of autism.

It also assumes that being more aware makes things better.

Are you sure about that ??

There is a large scale survey in Northern Ireland.

https://pure.qub.ac.uk/portal/files/15927178/Manuscript_Awareness_paper_APA_amended.pdf

this indicates tehir population is aware,  Wales is at least as good, or arguably better.

NAS tell us in their too much information that next to nothing ahs changed in 10 years of this as a policy.

So why is it still being pushed. 

People know about autism, htey meet people they see it on TV being "more aware" is not the same as doing something sensible with that awareness.

18

It will be good for the NAS,  serving to raise their profile.

Putting a focus on diagnosis is a bad idea.

A diagnosis is just a single point in a life span.

It turns this into a clinical issue with all the drawbacks of the medical model of disability as opposed to the social model which is WG policy.

http://gov.wales/topics/people-and-communities/equality-diversity/rightsequality/disability/socialmodel/?lang=en

What matters and makes a difference is what happens for the rest of the lifespan.

What barriers exist stopping a child or adult simply being a member of society.

A person valued for their own sake.

Not counted and sorted and being part of a graph or a report but just living their lives.

Accessing what everyone has a right to access, simply achieving their full potential and living a happy and fulfilled life. .

19

Does the autism population get a poor deal,? Yes.

Is this going to make a scrap of difference.? No

Sorry, this was written with the needs of a group of vocal Pembroke parents with young children in mind.

it badly misses the target.