National autism post-diagnostic support service - pilot programme: evaluation - easy read
Easy read version of the independent evaluation of National Post Diagnostic Support pilot programme from December 2020.
A report about support people get after being diagnosed with autism
Easy Read Version
This Easy Read is based upon an original report authored by Richard Mills, AT-Autism, and Scottish Autism's Centre for Practice Innovation.
The Scottish Government asked 7 autism support organisations to help them.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g01.jpg)
Diagnosis means a doctor telling you that you have a condition.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g02.jpg)
The time after getting a diagnosis is hard for people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g03.jpg)
They are not always sure of what happens next.
Scottish Government and the organisations want to make things better for people after they get a diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g04.jpg)
The activities were to be done during 2021.
They did this by asking people to take part in a new way of getting support after diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g06.jpg)
The organisations did some things the same and some different things.
All the activity was done online or on the phone because of the pandemic.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g07.jpg)
The activities that people thought were good will be used by all the organisations in future.
This means people who get a diagnosis will know what support they should get.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g08.jpg)
After they took part, they were asked questions about the new way of getting support.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g09.jpg)
Most of the people who answered the questions were adults.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g10.jpg)
Some people answered for their child.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g11.jpg)
The things we found out from the questions.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g12.jpg)
People said they liked the things the organisations did with them.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g13.jpg)
They said they were very helpful.
They said they gave important support to communities and the Scottish Government
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g14.jpg)
People said it is hard to get a diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g15.jpg)
They said it felt like a battle.
They said getting a diagnosis took too long and it was very stressful.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g16.jpg)
Some people said because of this they decided to go private for a diagnosis.
Most of the adults diagnosed were female.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g17.jpg)
People did not get much help or support when they were getting their diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g18.jpg)
Some people said they did get good help and support.
These examples can be used to make things better for other people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g19.jpg)
Some people said they were worried about what professionals thought about autism.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g20.jpg)
They felt what the professionals knew about autism was outdated.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g21.jpg)
They felt this was more true about women and girls with autism.
People said that even though it was hard, getting a diagnosis helped them with:
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g22.jpg)
- what to do next
- connections
- health
- education
- work
- dealing with professionals
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g23.jpg)
Many people said it was good because they already thought they or their child were autistic.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g24.jpg)
People said things were better after a diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g25.jpg)
They said they got good information and people listened to them.
People felt more confident after taking part in the activities.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g26.jpg)
They said now they know where and how to get more information and help.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g27.jpg)
People said they know more autistic people now and understand how it affects them.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g28.jpg)
Some people said:
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g29.jpg)
- they are less isolated or anxious
- they are more able to cope with the unknown
- their health and mental health is better
Most people said they would recommend taking part in the activities to other people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g30.jpg)
People said getting support from other autistic people was good.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g31.jpg)
They felt understood and a part of something, some for the first time.
Families said being listened to was good.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g32.jpg)
Having support after diagnosis was very good.
Many people said no services near them was a problem.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g33.jpg)
What people thought should happen next
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g34.jpg)
1. The organisations should be supported to get better at what to do.
They should work with different groups of people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g35.jpg)
2. Develop after diagnosis support so that everyone will know what to expect.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g36.jpg)
3. Scottish Government and a lead agency set up a system of support.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g37.jpg)
All the agencies should be part of this.
4. Make the diagnosis process easier for everyone.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g38.jpg)
Make sure everyone gets treated as quickly as possible.
Everyone should get an information pack after getting a diagnosis.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g39.jpg)
5. Make sure that the support organisations give a quality service.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g40.jpg)
Include autistic people. Ask them what they think good service should look like.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g41.jpg)
6. Update training for professionals. This should include how to work with people and families effectively.
Trainers should be autistic people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g42.jpg)
Scottish Government have given more funding for this work. It will carry on until June 2022.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g43.jpg)
Scottish Government want to do more to support autistic people.
![](/binaries/content/gallery/publications/consultation-analysis/2022/03/easy-read-national-autism-post-diagnostic-support-service-evaluation-pilot-programme2/SCT02223138862_g44.jpg)
This work is 1 thing to be included in that future plan.
Contact
Email: suzanne.kinross@gov.scot
There is a problem
Thanks for your feedback