Questions about why we need the Autism (Wales) Bill

1.       It's heading in the right direction but there are still huge improvements that need to be made - especially in adult services.

2.       Yes

2a      Yes

2b      Yes

3        Yes

4.       Yes

4a      At least once a year.

5.       Surveying those currently using or those who have recently been discharged from services.

6.       Enforce further mandatory training.

Questions about getting a better way to diagnose Autism

7.       It's a struggle and an even larger struggle for teens and adults.

8.       The lack of tailored autism services. A GP struggles to know where to refer you if you ask about Autism and in most cases they refer straight to mental health services. Autism should not be placed in the same realm as mental health.

The waiting times are too long and unless you are seen as an 'urgent' case, you can end up waiting months for referral and diagnosis.

I was in Child and Adolescent Mental Health services for nearly 3 years before they diagnosed my Autism. I was then never referred on to any adult services as there were none available except adult mental health which my consultant deemed inappropriate as autism should not be seen under mental health services. It's been over 2 years since my diagnosis and I have had no support with my Autism.

As a female on the spectrum, I constantly face the battle of professionals not understanding the difference between male and female symptoms. Females on the spectrum are too often misdiagnosed and don't receive the same level of understanding from professionals. 

I run a YouTube channel with over 12,000 followers (most of them Autistic or suspected Autistic) and I constantly get questions from people asking how they can get a diagnosis.  It’s not a clear path and everyone has to go down several routes before you get seen by the right person. It's common knowledge that a diagnosis of Autism is not an easy road and people are scared to seek help for fear of being shoved from one service to another before reaching the correct service.

9.       Yes.

Questions about improving the way people get support services

10.     No

11.     Yes

12.     Yes. There needs to be guidance on adult diagnosis also. Too many people are forgetting that Autism isn't just spotted in children and a lot of adults need to be informed of how they can seek a diagnosis if they require one. Child and Adolescent diagnosis can often take a different course than Adult diagnosis and the two should be made separate and clear.

13.     Yes

14.     Working closely with the National Autistic Society for data. But also using Autism influencers (bloggers / youtubers / advocates) as a way to access information in regards to support.

Monitoring how many patients are asking their GP about Autism and giving the patients a survey to fill out after the appointment to ask about the reasons why they are seeking an autism diagnosis. 

Question about autism training for staff

15.     It's getting better but is still very heavily influenced by the male symptoms of Autism. Training should be more well-rounded and there should be a higher level of understanding in regards to the subtle difference in symptoms that many women (and some men) with autism show.

16a    yes

16b    No

Questions about jobs for people with autism

17.     There needs to be an understanding that those with Autism want to work and have just as much to offer. Employers should be able to access basic Autism training to ensure that they know how to support their Autistic employees. Once they have chosen to undertake this training then they should be marked as an 'Autism-Friendly Organisation' to encourage those with Autism to apply for jobs and to feel secure that their potential employers can support them.

Those on the spectrum should be offered 'back to work' training so they can learn skills in areas like CV writing, interviews and references as well as being able to understand payslips, pension schemes and P45/P60 etc.

Questions about the definition of autism

18.     a. On the Bill

Questions about how much money my Bill may cost

19.     (no response)

Questions about how my Bill might save money

20.     A swift diagnosis can prevent money being spent diverting a patient from one service to another with no outcome. It will ensure that money is spent wisely and that people are referred to the best service first time round.

Getting support in employment can help those with Autism contribute to society and come off benefits like ESA. This saves the government a lot of money in the long run.

Question about other things to think about

21.     No

22.     (no response)

23.     I would like to see something in regards to independent living within the Bill.

Getting those with Autism into employment is a great step but one that won't have a huge impact unless those with Autism have the ability to live and travel independently.

Public transport and driving can both be hugely overwhelming for those with Autism. We must ensure that public transport continues to make steps in order to make train, bus and plane travel more accessible.

I'd also love to see training set up for older teens and adults on the spectrum to learn basic skills and understanding in cooking, budgeting, technology and DIY. I understand that classes are available but I'd like to see courses strictly for those with Autism. I value my independence as an Autistic person and it's something that doesn't come naturally to me. I'd like to see more support to help those with Autism achieve so much more in terms of independent living.