Cynulliad Cenedlaethol Cymru

National Assembly for Wales

Bil Awtistiaeth (Cymru) drafft

Draft Autism (Wales) Bill

Arolwg Ar-lein DAB71

Online Survey DAB71

Ymateb gan Cyfrannog ar-lein 71

Evidence from Online Participant 71

Please refer to questions in the Online Survey.

Question

Answer

01

Yes

If the Bill will state that autism spectrum disorder means whatever the World Health Organisation says, then the definition as provided by the World Health Organisation should be included in the Bill.

02

Yes

03

No

Surely FE institutions, Training providers and employers should also have a responsibility to implement the bill. What are we creating a bill for if it isn't to increase the chances of individuals with Autism gaining better education and employment? I would have thought that this would be legislative for FE and Training providers due to the introduction of the ALN Code which covers young people up to the age of 25.

04

Yes

Provided that there is high level of consultation with NHS staff and local authority staff (including education) to ensure that the bill is fit for purpose in the first place.

07

I think there should be a longer evaluation period of the bill before it becomes legislative. There have been many aspects of WG policy in the past that have been impractical to implement because not enough time was focused on the diversity of the differe

08

The Bill should state the timescales used by National Institute for Health and Care Excellence and review the bill every three years to ensure that the timescales (and other areas of policy) remain fit for purpose.

09

Yes

I appreciate that this is a tight timescale but ultimately giving a diagnosis without a care package is like diagnosing someone with a physical illness and not providing any treatment. We wouldn't be allowed to get away with this for a physical illness because of the long term impact it would have. Autism is no different - lack of practical and financial support limits life chances.

10

Yes

The differences in their roles should also be explained so that those referred for assessments understand what is being assessed and by whom.

11

The bill should also explain the referral process for such assessments. For example, in my local area, a child needing an autism assessment is referred to Child and Adolescent Mental Health Services via their GP but a Neurodevelopmental Disorder assessmen

12

Co-occurring learning difficulties, e.g. ADHD and Autism or ADHD and Dyspraxia can make access more challenging. Sometimes one difficulty can mask symptoms of the other diagnosis and make it harder to unpick the pattern of behaviours. In the case of co-occurring Dyspraxia, ADHD and Dyslexia, literacy difficulties can mean that the autistic individual is unable to advocate for themselves. Current screening methods exacerbate this and questionnaires currently used by screening services can be extremely complex, i.e. does your average parent of a potentially autistic child understand what 'idiosyncratic behaviours' means in order to give examples of them! My husband and I did the questionnaires together. We both read perfectly well and I am educated to post graduate level (specialist Dyslexia assessor and tutor) and found many parts of it challenging to complete. The fact that the Bill has an easy read version is commendable but it needs to recommend easy read versions of everything else!!!

13

Yes

14

Age, age of diagnosis, health board/local authority under which it was obtained, how they were diagnosed, job title of the people who diagnosed them, other tests completed. Ideally this should all be contained within a report that should given to the indi

15

It should be written in the guidance.

The Bill will be lengthy. Essential information should be summarised in the guidance, so that it is easier to see immediate actions as opposed to long term actions.

16

Yes

WG should require those funded by them to show how funding is being used to support Autistic individuals and how this is making an impact.

17

It should happen all the time.

Awareness raising happens with a snow ball effect, not as an annual, biannual or triennial event. Social Media is an amazing tool for effecting social change but by it's very nature, information sharing on social media needs to be frequent, constantly updated and current, otherwise the snow ball effect loses momentum.

18

I think it is a great step forward to give Autistic individuals a more even playing field and for re-educating employers so that they appreciate the benefits of employing those who are Neurodiverse. Ultimately, this reaps much wider benefits, in which we move from a viewpoint that categorises Neurodiverse people as 'deficient' to a viewpoint that recognises that they are highly 'efficient' but within a specific skill set that can be prove beneficial to both the company and the individual. 

The stats about the numbers of people in the criminal justice system who have an un-diagnosed difficulty are shocking. We have to tackle social inequalities before they reach this point as we have epidemic proportions of people slipping through the gaps and deteriorating into social exclusion. That's without even measuring the impact on mental health services.

19

My daughter has been referred for an ADHD diagnosis which has also screened her for Autism. She is 8 now. We have known there was a problem since she was 5 and she may not be seen until she is 10 years old. We have had to  find our own strategies by trial