National autism post-diagnostic support service - pilot programme: evaluation

Confidential consolidated report of survey responses (redacted)

Respondents

The survey went 'live' on February 15^th 2021 and remained open until July 14^th 2021. There were 149 responses.

Respondents came from the Health Board regions across Scotland, with 3 respondents residing outside Scotland. Numbers (in brackets) and percentages of respondents by region are shown:

In which of the following Health Board regions do you reside?

The service or programme accessed by respondents is shown in the table below. Where respondents accessed more than one service or programme they were asked to identify the primary service or programme they had most contact with, or had most help from only.

Service or Prgramme

The majority of respondents (99, 66%) are 'An autistic person (over 16 years old)', the remaining 50 (34%) are 'A family of an autistic child (16 and under)':

Are you?

Respondent profile

For Individuals: Autistic person (over 16 years)

Of the 99 respondents, 72, (73%) have received a diagnosis of autism within the past three years, the remaining 27 (27%) have not.

Have you received a diagnosis of autism within the past three years?

The age profile of those who have received a diagnosis of autism within the past three years is as follows:

Your age when that diagnosis was made

For the same cohort of 72, the profile in respect of their sex is as follows:

What is your sex?

For those above, for the majority their present gender is the same as the one assigned at birth:

Is your present gender the same as the one assigned at birth?

Optionally respondents could 'enter in words your preferred gender identity'. The 16 responses are given with the numbers responding using that description in brackets:

Male (3)

Female (6)

Genderfluid (1)

She/her (1)

Heterosexual (1)

Non-binary (1)

Woman (1)

I am a man, then, now and forever (1)

Nonbinary woman (1)

For Families of an autistic child (16 and under)

Of the 50 respondents, 44, (88%) say their child has received a diagnosis of autism within the past three years, the remaining 6 (12%) say their child has not.

Has your child received a diagnosis of autism with the past three years?

The age profile of the child at diagnosis is given below:

Age of your child at diagnosis

Responses for Individuals: Autistic person (over 16 years)

Regarding an autism diagnosis:

It was noted above, that of the 99 respondents who are 'An autistic person (over 16 years)', 72 had received a diagnosis. Responses for these are given as follows.

Prior to diagnosis I had self-identified as autistic, as I felt I met the criteria for autism

Other people suggested I go for an autism diagnosis (e.g. family, friends, professionals)

My diagnosis of autism has been helpful to me

My diagnosis has been helpful when dealing with professionals (e.g. health and government services)

My diagnosis has been helpful to me in my employment/education

Following my diagnosis, my family is more understanding of me

Following diagnosis I know where to go for help when I need it

My diagnosis has been a positive (good) experience for me

Regarding the service/programme

The information about the service/programme was clear and accessible to me

I felt I was listened to by the service/programme staff

My expectations for what the service/programme would achieve were:

My goals for what the service/programme would achieve were

The information about autism was relevant to me

The advice I received was clear

I now have a connection with other autistic people

I already had a connection to autistic people, but this has increased

Since my involvement with the service/programme, I feel more confident

Since my involvement with the service/programme, I have a better understanding of autism

Since my involvement with the service/programme, I feel less socially isolated

The service/programme gave me good information about the services and opportunities

Since my involvement with the service/programme, I feel less anxious

Since my involvement with the service/programme, I can cope better with uncertainty

Since my involvement with the service/programme, I feel my quality of life has improved

Since my involvement with the service/programme, I get less stressed about things generally

Since my involvement with the service/programme, I feel my general health has improved

Since my involvement with the service/programme, I feel my mental health has improved

Since my involvement with the service/programme, my sleep has improved

The service/programme has enabled me to know and understand myself better

Since my involvement with the service/programme, I feel more positive about myself (e.g. my self- esteem)

Since my involvement with the service/programme, I feel confident when dealing with professionals (e.g. from health/employment, education/ government agencies)

I recommend this service/programme to others who have received a diagnosis of autism

Responses for Families: A family of an autistic child (16 and under)

It was noted above, that of the 50 respondents who are 'A family of an autistic child (16 and under)', 44 had received a diagnosis. Responses for these are given as follows.

Regarding an autism diagnosis

Prior to diagnosis we felt our child might be autistic

Other people suggested we get an autism diagnosis for our child (e.g. family, friends, professionals)

As a family, the diagnosis of autism has been helpful to us

Following diagnosis our family relationships have improved

The diagnosis has been helpful when dealing with professionals (such as health or education)

Following the diagnosis, we are better able to understand our child

Following diagnosis we know where to go for help when we need it

As a family the autism diagnosis has been a positive experience for us

Regarding the service/programme

The information about the service/programme was clear and accessible

As a family, we felt listened to by service/programme staff

As a family, our expectations for what the service/programme might achieve were:

As a family, our goals for what the service/programme might achieve were:

As a family we felt our concerns were understood by service/programme staff

The information about autism was relevant to our child

As a family, we were confident in the advice provided

Since our involvement with the service/programme, we now have a connection with other families with an autistic child

As a family we already had a connection to other families, but this has increased since our involvement with the service/programme

As a family, since our involvement with the service/programme, we feel more confident when dealing with professionals (e.g. health, social services, education)

Since our involvement with the service/programme, as a family we feel we know more about autism

Since our involvement with the service/programme, as a family, we know more about how autism affects our child

Since our involvement with the service/programme, as a family, we feel less socially isolated

The service/programme gave good information about the services and opportunities

Since our involvement with the service/programme, as a family we are more able to cope with anxiety

Since our involvement with the service/programme, as a family we feel our quality of life has improved

Since our involvement with the service/programme, as a family, we feel less stressed about things generally

Since our involvement with the service/programme, as a family, we can better cope with day-to-day events

Since our involvement with the service/programme, we feel more positive about the future for our family and our child

As a family, we now know where to go for help when we need it

We feel we can recommend this service/programme to other families who have received a diagnosis of autism for their child

Responses where neither Individuals (Autistic person (over 16 years)), nor the family of an autistic child (16 and under) has received a diagnosis of autsim in the last three years

As noted above, there are 27 individuals and 6 families of an autistic child who have not received a diagnosis of autism in the last 3 years.

The information about the service/programme was clear and accessible

The service/programme staff were good listeners

My expectations for what the service/programme would achieve were:

My goals for what the service/programme would achieve were:

The information about autism was relevant

Overall, the service/programme was helpful