Online Survey

1. Introduction

My name is Paul Davies. I am an Assembly Member (AM) for Preseli Pembrokeshire.

The National Assembly for Wales said I could try to get a new autism law for Wales. I will call this law theAutism (Wales) Bill.

To help me write the Autism (Wales) Bill I asked people for their ideas. I asked what they thought should be in it. Their responses are listed at responses to the first Autism (Bill) consultation.

The Bill would require the Welsh Government to publish an autism strategy and guidance on how it should be used.  The current Welsh Government already has an Autistic Spectrum Disorder Strategic Action Plan, but the Bill would make sure that there would always be an autism strategy, even if the government changed.

I used what people said to write a draft Bill. Now I would like you to read my first draft of the Bill. And tell me what you think about it.

You can tell me what you think about any part of it (this is the last of the 19 questions in this survey).

But there are some things I would really like your thoughts about. I have written some questions about these things. You can answer as many of the questions as you would like.

For full details about how the information you provide will be used please see the National Assembly for Wales’ Member Bill privacy policy.

2. Definition of autism spectrum disorder

These questions are about page 5 in the easy read draft Autism (Wales) Bill, or section 7(1) of the draft Autism (Wales) Bill.

People said the Autism (Wales) Bill may take support away from other neurodevelopmental disorders.

I want to make sure the Bill does not take support away from other neurodevelopmental disorders.

Because of this, the draft Bill says that autism spectrum disorder means:

− whatever the World Health Organisation says that autism spectrum disorder means; plus

− any other neurodevelopmental disorder that the Welsh Government say should be treated in the same way as autism.

This means that if the Welsh Government believes the Bill should help people with other neurodevelopmental disorders, it can make it do so.

1. Do you think a definition of autism spectrum disorder should be in the Bill?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

The draft Bill uses the World Health Organisation’s definition of autism spectrum disorder.

It also gives powers to Welsh Government to add other neurodevelopmental disorders to this definition.

This is to make sure the Bill does not take support away from people with other neurodevelopmental disorders.

2. Do you think this is the best way to do this?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

3. Who should have to follow the Bill?

This question is about page 7 in the easy read draft Autism (Wales) Bill and section 7(1) of the draft Autism (Wales) Bill.

The draft Bill says local authorities and the NHS should do what the strategy and guidance about the Bill says.

The Welsh Government also has the power to say other organisations should follow the strategy and guidance about the Bill.

3. Are local authorities and the NHS the right organisations to carry out the aims of the Bill?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

4. Making sure the Bill is being followed

This question is about page 7 in the easy read draft Autism (Wales) Bill and section 4 of the draft Autism (Wales) Bill.

The draft Bill says local authorities and the NHS should:

− Think about the autism strategy when doing their work. The strategy will say how to meet the needs of people with autism spectrum disorder. 

− Think about the guidance when doing their work. The guidance will explain how to follow the autism strategy. 

The Bill could be changed to give the Welsh Government extra power to tell local authorities and the NHS what to do.

It would use this power if it thought the strategy and the guidance about the Bill were not being followed.

However this power is not normally included in legislation unless there is an obvious need for it.

4. Should the draft Bill be changed so that the Welsh Government has extra power to tell local authorities and the NHS to do something?

This will be something that will make sure they follow the strategy and the guidance about the Bill.

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

5. How much time should things take?

The draft Bill says:

− The Welsh Government should write an autism strategy. This should be written within 6 months of the Bill becoming law. 

− The Welsh Government should write guidance about following the autism strategy. This should be written within 3 months of the autism strategy being written. 

− If the Bill is agreed by the National Assembly then the law will start 3 months afterwards.

5. Do you have anything to say about the Welsh Government getting 6 months to write an autism strategy?

(This question is about page 8, in the easy read draft Autism (Wales) Bill, and section 1(4), of the draft Autism (Wales) Bill)

6. Do you have anything to say about the Welsh Government getting 3 months (after the strategy has been written) to write guidance?

This question is about page 18 in the easy read draft Autism (Wales) Bill, and section  3(2) of the draft Autism (Wales) Bill

7. Do you have anything to say about this law starting 3 months after it is agreed to?

This question is about page 7 in the easy read draft Autism (Wales) Bill, and section  9 of the draft Autism (Wales) Bill

6. Getting a diagnosis

These questions are about pages 11 to 13 in the easy read draft Autism (Wales) Bill, and section 2(1) of the draft Autism (Wales) Bill.

A diagnosis is a decision that a person has autism spectrum disorder.

The draft Bill says that the Welsh Government must write an autism strategy. The strategy must help people get a diagnosis of autism as soon as possible.

The draft Bill says diagnosis should happen as soon as possible, and within the timescales written in guidelines by the National Institute for Health and Care Excellence (NICE).

This means that any changes to the guidelines set by the National Institute for Health and Care Excellence would also change the autism strategy’s timescales for diagnosis.

The draft Bill also says that when a person gets an autism diagnosis they must have an assessment.

An assessment is a decision on what care and support a person (with autism spectrum disorder) needs.

The draft Bill says this should happen as soon as possible, and within 2 months of getting a diagnosis.

8. Should the Bill use the timescales that are in the National Institute for Health and Care Excellence guidelines?

They would be used to say the longest time it should take to get a diagnosis.

This means the autism strategy timescales would change if the National Institute for Health and Care Excellence guidelines change.

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

9. Should an assessment happen within 2 months of getting a diagnosis?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

7. Assessment teams

These questions are about pages 19 to 21 in the easy read draft Autism (Wales) Bill and section 3(6) of the draft Autism (Wales) Bill.

The draft Bill says that a team of people should be involved in diagnosing a person with autism spectrum disorder.

The draft Bill gives examples of the type of people who could be in the team. They are:

− A psychologist. 

− A psychiatrist. 

− A speech and language therapist. 

− An occupational therapist. 

− A behavioural therapist. 

− A social worker.

10. Should the Bill include examples of the type of people who could be in the assessment team?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

11. If yes are there any others that should be in the list?

8. Being treated fairly

This question is about page 13 in the easy read draft Autism (Wales) Bill and section 2(1)(f) of the draft Autism (Wales) Bill.

The draft Bill says that people should not be turned away from services because of things like their level of intelligence, known as IQ, or because they have an illness.

12. Are there any other things that might stop a person with autism spectrum disorder from getting the services they need?

9. Information about autism spectrum disorder

These questions are about page 23 in the easy read draft Autism (Wales) Bill, and sections 3(6)(d) and 5 in the draft Autism (Wales) Bill.

The draft Bill says Welsh Government must collect information about people with autism spectrum disorder.

13. Should the Bill say what kind of information should be collected?

□ Yes

□ No

□ Not sure

14. If yes what kind of information do you think should be collected? This could be things like:

− a person’s age

− if they are male or female

− the age they were when they got diagnosed

− what health board/local authority area they are in;

− how long it took them to get a diagnosis

− how they were diagnosed

− the job titles of the people who diagnosed them

− if other tests were done.

15. If the Bill says what kind of information should be collected, where should this be written?

Should it be written on the Bill or in the guidance?

□ It should be written on the Bill.

□ It should be written in the guidance.

□ Not sure

You can explain your answer if you want to:

16. Should the Welsh Government be able to ask other organisations for information (although this won’t necessarily include the names of people)?

□ Yes

□ No

□ Not sure

You can explain your answer if you want to:

10. Raising awareness

These questions are about page 24 in the easy read draft Autism (Wales) Bill and section 6(1) of the draft Autism (Wales) Bill.

The draft Bill says that when the autism strategy is written the Welsh Government must start raising awareness of the needs of people with autism spectrum disorder. They must keep doing this.

This means the Welsh Government would always be helping people to better understand the needs of people with autism spectrum disorder.

A different way of writing the Bill is that it could say the Welsh Government should raise awareness every 3 years at least.

17. Should raising awareness happen all the time? Or should it be every 3 years?

□ It should happen all the time.

□ It should happen every 3 years.

□ Not sure

You can explain your answer if you want to:

11. Will the Bill be good for people?

These questions are about all of the easy read draft Autism (Wales) Bill and all of the draft Autism (Wales) Bill.

18. Do you think the Bill will be good or bad for people?

In particular, do you think it will be good or bad for:

− People wanting to speak English or Welsh.

− People wanting things to be fair for everyone.

− The justice system in England and Wales.

− You - will it cost you anything, or give you any help?