Transcripts of "Supporting people with autism through adulthood" videos

 

 

Contributors

 

Dean Beadle

Jo Dowbekin

Sharon Adokorach

Ben Conners

Gabriel Hardisty-Miller

Paulo Zeppetelli

Drew Miles

Robyn Stewart

Sarah Hewitt

David Shamash

John Booker

Mark Lever, CEO, The National Autistic Society

Dr Jamie Nicholls, GP

Geoffery Maddrell, Chairman, Research Autism

Carolann Jackson, Parent

Helen Chipchase, BT Group, People & Policy Team

Christina Earl, Team Manager, Employability, Surrey

Nicola Smith, Disability Officer, London South Bank University

Anthony Bailey, Cheryl & Reece Scott, Professor of Psychiatry

David Perkins, Manager, Prospects Employment Services

Dr Paul Skirrow, Clinical Psychologist, Liverpool Asperger Team

Chris Austin, Team Manager, Liverpool Asperger Team

Paul Davies, Service Director, Adult Social Service, Oldham

Alex Scharaschkin, Audit Manager, Health Value for Money Studies, NAO

Rowena Tozer, Audit Principal, Health Value for Money Studies, NAO

Frazer Clark, Audit Manager, Health Value for Money Studies, NAO

Mark Davies, Director, Health Value for Money Studies, NAO

 

 

Robyn: Autism is a neurological condition and it affects how the brain

works.

Mark L: It’s a spectrum condition; we talk about the autistic spectrum.

Anthony B: The majority of individuals are functioning within the normal

range of intelligence.

Mark L: You can have some people at one end of the spectrum who

have very high I.Q.s.

Sarah H: It’s just the way I am really. It doesn’t cause any problems.

Mark L: At the other end of the spectrum you can have people who are

non-verbal, and require significant amounts of support.

Gabriel: *Yes*

Jamie N: There are very few authorities around that actually know the

number of people on the autistic spectrum.

Robyn: Because I’m articulate and I can explain the kind of difficulties I

have, people tend to assume I am thus able to cope.

Geoffrey M: The fact that we are not giving the right support to those on the

spectrum is an enormous figure.

Mark L: Many of the parents that we speak to and many of the people

with autism we speak to describe it as falling off the edge of a

cliff.

Carolann: She had no transition plan, she received no services as a young

or older teenager.

Geoffrey: How many actually go to university and succeed or fail? How

many get into jobs? Not many, we know that.

Jamie N: It would be nice to have generic training in autism that everyone

could understand.

Geoffrey: It’s very clear it is a disability but it’s not a disability that’s

particularly recognised.

Jamie: It doesn’t have to be complicated. You don’t need everyone to

be an expert.

Geoffrey: They’re well able to do a job of work and they’re constantly

rejected.

Helen C: If we just create the right environment for them to flourish then

we’re getting amazing people to do amazing things for our

business.

Christina: It’s not just about the money and the salary. It’s much more

about being the same as everyone else. Having the same

opportunities.

Nicola: The support that students with Asperger’s Syndrome really

need is with regard to their social skills.

Mark D: There is a wide range of bodies that need to come together to

provide services in a tailored and intelligent way.

Anthony B: In purely monetary terms it’s that if people are in employment

they’re paying taxes and not drawing benefits.

Mark D: This is a very important report for the National Audit Office.

Because in looking at autism I think it raises a range of issues

that actually get to the heart of how modern public services are

delivered.

 

Robyn: Autism is a neurological condition and it affects how the brain

works. So it affects brain functions in three main areas, which

are communication, theory of mind and social skills.

Mark L: It’s a spectrum condition; we talk about the autistic spectrum.

And what that means is that you can have some people at one

end of the spectrum who have very high I.Q.s. but still need an

incredible amount of support to live independently. At the other

end of the spectrum you can have people who can be nonverbal

and require significant amounts of support to live their

lives.

Jamie N: There’s another sense, it’s the sense of being. The sense of

being part of the human race, of fitting in, being able to

communicate, the sense of communication, of language in its

broadest sense. Not just talking but body language and I think

autism is a problem within that sixth sense.

Jo: You know when you were saying you don’t like it when it’s noisy

and you don’t like when it’s crowded, and there’s too many

people and it’s really confusing.

Sharon: - And no space.

Jo: Those feelings are part of your autism aren’t they? Part of the

feelings you get because you can’t always understand all the

noises and the people and stuff?

Sharon: (Acknowledges)

Ben: Perhaps things are more different to you than they are to me.

Do you think that that’s a good thing? That everybody has these

differences?

Gabriel: *Yes*

Paulo: If you can imagine that your brain has all these cells and wires

attached to each other. Someone who’s autistic or has

Asperger’s may have some of the those links missing. What

they might do is connect them into the wrong places. They

might think they’re acting normally, that what they’re doing is

acceptable to society. But to others they might be seen as

unusual.

Carolann: Every job and every situation in life requires some form of social

communication and interaction between people. Even if it’s only

the shopkeeper or the milkman. We just take that for granted,

we do it intuitively, it’s instinctive. But people with Asperger’s

syndrome have to think about it and worry about it. “Am I doing

this right? Am I saying it right?” And that tiny aspect of our daily

lives assumes enormous proportions in their daily lives.

Anthony B: The majority of individuals are functioning within the normal

range of intelligence. Some of them may have a history of

language delay and we tend to use the term ‘able autism’ to

describe those individuals. Whereas people whose language

development has not been delayed will often get given a

diagnosis of Asperger’s syndrome.

Mark L: People with Asperger’s syndrome can be very eloquent and

very intelligent and tend to be quite focussed on a very

particular area of interest. And on the face of it would not

appear to require any support of services but actually the

support and services that are required to enable them to live an

independent life can be quite basic. On the face of it they may

be very knowledgeable about a particular area but may struggle

with the basics of day to day life like doing their own washing or

doing their own shopping. So that basic level of support is

required to help them live an independent life.

Sarah H: It’s just the way I am really. It doesn’t cause any problems as

such, it just means that people are aware that sometimes I may

behave a little differently, I think about things a little bit

differently. It doesn’t mean that I still don’t have problems but it

means I’m more able to deal with them.

Mark D: It’s about tailoring services to meet the needs of individuals and

that means more often than not that existing methods and ways

of delivering services have to be thought through carefully, and

quite often reconfigured. And I think the importance of autism is

that it is a particular challenge by the nature of its variety and

because people are on a spectrum to actually meet individuals’

needs. So it’s an extremely important subject to be covering.

Part 1. Strategy and planning for adults with autism video

 

Jamie N: There are very few authorities around that actually know the

number of people on the autistic spectrum in their area. It’s a

rather difficult thing to find out anyway because there is no

central register of autism.

Geoffrey: The cost to society, a lot of it’s to do with the fact that we are

not giving the right support to those on the spectrum, is an

enormous figure.

Robyn: Robyn: The NAS’s recent survey showed that 26% of

people didn’t realise that people on the autistic spectrum would

always have an autistic spectrum disorder that wasn’t a

childhood illness. Medical professionals believe that, nurses,

doctors don’t seem to realise this is a forever thing.

Jamie N: It doesn’t feature on general practitioners’ lists. If I use my

computer here I can put down that someone is on the autistic

spectrum. I can code them with that diagnosis but that doesn’t

really give any idea about what services that person requires

because they may be severely autistic requiring 24 hour care or

they may be somebody with a few anxiety problems and a bit of

an obsessional nature who just about classifies as having

Asperger’s but with a little bit of help and TLC can survive in the

’normal’ world.

Geoffrey: When we talk about a number of 500,000 frankly we don’t

know. And why has the number gone up dramatically? Because

we are starting to diagnose. And it’s partly also because

Asperger’s, the higher IQ end of the spectrum is something that

only recently come to light. Hans Asperger developed this

understanding years and years ago but it was only interpreted

into our language in the late eighties/early nineties. So as we

learn more, so the spectrum expands.

Rowena: Our survey of local areas found that while a large majority of

these areas had these strategic needs assessments only about

a fifth had specific reference to people with autism within them.

Anthony B: The challenge is to increase training so that really regardless of

where you are in the country if you walk into a GP’s surgery or

seen by an adult psychiatrist that person will feel confident in

being able to say “Yes I think you have an autism spectrum

disorder.”

Geoffrey: The big issues, and I’m not necessarily making this exclusive,

but it’s normally the change points. The change points from

school, when they’ve had all the support systems, what

happens then?

Mark L: Many of the parents that we speak to and many of the people

with autism we speak to describe it as falling off the edge of a

cliff.

Carolann: I have to tell you that the word transition when I first heard it,

which was when my daughter would have been about 18, I

didn’t know what it was. She didn’t have a transition plan.

Mark L: They literally fall off the radar system of children services and

then have to start again by interacting with adult services.

Carolann: The whole concept of transition did not exist. Or if it did it did

not apply to her.

Dean: A lot of people reach 18 and are stranded. The education

system takes them up the mountain and says “Well done,

you’ve got to the top” and then they get left there. And it’s

incredibly important that we have someone there to help them

carry on forward.

Carolann: She had no transition plan she received no services as a young

or older teenager anymore than she does now as an adult.

Jamie N: That’s the time they can be made or broken.

Geoffrey: How many go to university and succeed or fail? How many get

into jobs? Not many we know that. How many end up in mental

health environments? How many are living at home? What

happens to them when their parents die? What are the local

authorities doing to support them? I am fair to say that is a

blank page.

Carolann: As a teenager she didn’t fit either. “She had a brain, high I.Q.

What’s wrong with her then?” and that’s the kind of attitude you

got all the time.

Rowena: We recommend that local authorities and NHS bodies make full

use of existing information that they have about both children

and adults with autism to enable them to effectively plan and

commission future services for adults with autism in their local

areas.

Part 2. Knowledge and awareness across public services video

 

Mark Davies: Currently there is a significant lack of knowledge and

awareness amongst the people, the individuals and the

professionals who come into contact with people with autism.

Mark Lever: The training that GPs and other health care professionals

receive in autism is woefully inadequate.

Jamie N: The usual presentation is that somebody suspects that there is

a problem and they tend to bring them to their GP because

we’re there and we’re free basically. So it becomes something

that as a GP or at Primary Care you get presented with this.

The GP needs to be able to pick, just to be able to check, that

this is an autism spectrum type problem and know in the area,

be it a child or an adult, who to refer them on to.

Mark L: Across the board there is a real lack of training in diagnostic

techniques but also in the assessment of need for people with

autism and Asperger’s syndrome.

Robyn: The report I’ve received from my GP has been very inadequate

because they’ve not fully understood my needs. Because I’m

articulate and I can explain the kind of difficulties I have people

tend to assume I am thus able to cope with the problems that I

have.

Drew: “You can’t possibly have Asperger’s… the way you put

yourself across seems like you’re a perfectly social young

man.”

Jamie N: The sort of training that will be required for General

Practitioners like myself is probably not that much different

from the sort of training that will be needed for teachers, in

particular the SENCO teachers in schools. For people maybe

higher up in the police force that do judiciary, other people

who might come up against someone with autism. It’s not

rocket science, it’s an understanding of human nature.

Robyn: Just because I can tell what difficulty I have it doesn’t mean

I’m able to get around that difficulty. My brain is physically

wired to inhibit me acquiring that skill or developing that skill

without any help.

Jamie N: So the same talk I give to GPs I can give exactly the same talk

to teachers and they’ll understand, it’s at the same sort of

level. It would be nice to have a generic training in autism that

anyone could understand rather than trying to break people

down into groups – you have a specific training system for

educating GPs, another one for nurses, another one for health

visitors, one for the police, another one for social services

because they can all be the same.

Mark D: It’s very important when they are coming into contact with

people who are ultimately deciding whether they should have

access or eligibility or support in regard to benefits or

employment, that those people are making informed and

intelligent decisions based on a good level of understanding of

the individual’s needs and their condition.

Jamie N: You don’t need everybody to be an expert. You need

everybody to have that little bit of awareness going on up

there that sparks a little light and says, “Could this be autism?”

and then to know where to refer to.

Frazer: The benefits and employment system can be challenging for

people with autism, particularly around access. That ranges

from even the difficulties with the environment of Jobcentre

Plus, where due to sensory needs and very specific challenges

associated with autism, people may find that environment

difficult to cope with.

Drew: Jobcentres can be terribly unhelpful. A local friend of mine

from Havering who also has Asperger’s has become

completely adverse to even entering a Jobcentre anymore.

Because the last time he’s been in them he’s ended up in

panic attacks and fits of tears.

David: Anybody in a Jobcentre Plus who is going to be dealing with

an autistic job seeker whether it’s on the telephone or in

person should have a half day’s awareness training.

Drew: This has greatly affected how I and others with similar

conditions have been able to find any way back into work.

David: Unless they’ve had training which specifically addresses those

issues and enables them to understand it and respond

appropriately, it is highly unlikely they’ll be able to respond

effectively to an autistic job seeker. That job seeker, in turn, is

likely to perceive that lack of understanding as inaccessible.

They’re not going to be able to pursue a job through that route

basically.

Frazer: We’re not suggesting that every individual advisor be an

expert in autism. But we feel there is a scope to recognise

potential needs of people with autism by coming from an

informed stand point. That may well be driven by the person

saying, “This is my diagnosis”.

Mark L: One of the challenges of trying to get and support people with

autism and Asperger’s Syndrome into employment, is to

recognise that a significant amount of effort and support is

required pre-employment.

Christina E: If you’re a teenager and you’re at college you get a Saturday

job. If you’ve got a learning disability or autism that’s not

always a priority but it should be. Because it’s about bringing

normal life into the lives of people whatever their disability.

Geoffrey: You have to tell people this person is on the autistic spectrum.

These are the conditions that are appropriate for them, these

are the conditions that are not appropriate.

David: Most employers are very open to making the reasonable

adjustments that are required of them. Their attitude tends to

be, “OK, tell us what we need to do and we’ll try to adapt”.

And many of them do.

Helen: It’s hugely important to create a supportive culture for

everyone in the business and people with AS are no exception.

One of the key things we’ve created is a working with

Asperger’s Syndrome fact sheet. We created it in partnership

with Prospects and they did say it was one of the best fact

sheets they had seen on the subject.

Paulo: I would have definitely benefited from more support, if they

had understood what the characteristics of AS were. It would

have just made things so much easier and self-explanatory. I

wouldn’t have had to explain myself.

David: I really don’t want to mystify this or over complicate it. It really

isn’t difficult to accommodate an autistic person in the work

place. A lot of it comes down to common sense and common

decency.

Geoffrey: They’re well able to do a job of work and they’re constantly

rejected because they cannot interview properly, or they may

get into a job but it’s not structured properly. And they lose

that job and they never get another one. You can imagine what

affect that has on confidence and confidence is a critical thing.

Christina E: We come with them, we come with them at the interview, we

come with them in the job and we train people in the job. So

the employer doesn’t have to do that. If at the end of the trial

it’s not worked out we will just move that person and take

them to another opportunity. We wouldn’t leave somebody

where it’s obviously not working out for the employer or the

individual.

Helen: One of our employees, Sarah Hewitt, has set up an autism

spectrum disorder share point, which is being used by

employees with ASD and friends and family to share

knowledge and to gain contacts and talk to each other.

Sarah H: It’s becoming more and more common now not to have to

explain what Asperger’s syndrome is to somebody. Where as I

think 5 years ago when I was diagnosed, people didn’t really

know about it so I think something is working.

Christina E: Sometimes someone gets themselves a job without any help

at all which is great. But if it hasn’t been worked out, there can

be problems further down the line and sometimes we can get

called in, because, it can be as bad as a disciplinary or a

grievance procedure, but actually with a little bit of help from

us that can be sorted out and then we can keep that job going

longer term.

David S: I was too slow packing the shopping. Because that job

involved packing shopping and taking it across the road and I

think it was clumsiness why I couldn’t pack it fast enough, a

kind of dyspraxia. And the DEA said I wasn’t losing my job

because of social skills so it’s got nothing to do with autism.

Paulo: First impressions count and a lot of people unfortunately

judge. So autistic people fall into that trap by being so honest

and being themselves that the employer has conjured up all

these connotations, all these judgements, so they don’t get

the job. So I’ve had to act my way into a job.

Christina: We’ve had someone recently who’s being going to a day

service for 20 years. Never had a job, 42 years of age, he’s

just got a job in a high street café. He’s absolutely loving it and

he’s a changed person. He stands different, he looks more

confident, he smiles, people when he walks down the street

wave at him because they’ve seen him in the cafe. Now he’s

actually only working for about 6 hours a week so it’s a very

small commitment if you look from an employer’s point of view

and you’re looking at minimum wage level, 6 hours a week.

It’s changed this individuals life, but it also brings people into

the café and the whole community know this individual.

Whereas before he would have been locked away in a day

service excluded from the community.

Dave: They do have the capacity to become very consistent and

reliable employees.

Helen: If we can do this then there’s no reason why any other

organisation can’t.

Christina: It’s not just about the money and the salary. It’s much more

about being the same as everyone else. Having the same

opportunities.

Part 3. Eligibility and access to services

 

Jamie N: The problem autism has faced all along the line is that it doesn’t

fit into any one particular person’s camp.

Anthony B: This isn’t rocket science, the criteria needs to be changed to

include people who clearly need help.

Jamie N: The learning disability specialists will only take it on if the

person has a co-morbid learning disability. Asperger syndrome

and autism are not mental illnesses and so the psychiatrist of

the mental health sort… it doesn’t fall into their remit either.

Somehow it seems to be nobody’s pigeon to take on and deal

with.

Frazer: We were able to confirm that finding through our own survey

work. For example, through local authorities and their NHS

partners and around three quarters of those respondents

confirmed that people reported difficulties or experience

difficulties if they had high-functioning autism, in accessing the

services they required.

Carolann: I had to be incredibly determined which is what most parents

have to be. Very, very determined. When I first took her to see

Child and Family Consultation services they didn’t even know

what Asperger was. They thought it was a learning disability. In

fact when I got back to them and said my daughter did have a

confirmed diagnosis they refused to believe me.

Anthony B: Criteria continually needs to be evolved as our understanding of

the wide range of developmental difficulties and adult onset

disorders expands.

Frazer: Our survey work, again of local organisations, suggested that

only a quarter are commissioning special diagnostic services of

this kind. Which means people are very unlikely in many areas

to be able to access specialist diagnostic services and from

there be referred for appropriate ongoing support.

Anthony B: Occasionally people are misdiagnosed. And that can be

frustrating for everyone involved. It’s frustrating for the

individual but it’s also frustrating for the health team looking

after the person because it can sometimes be a mystery why

they are not responding to a treatment that ought to be effective

if the diagnosis was correct.

Mark L: If they don’t get the right diagnosis and the right support it can

lead to severe depression and chronic mental health conditions.

Frazer: Very often respondents said they struggled to find local services

appropriate to people needing supported housing, residential

accommodation, and indeed a more NHS or private sector inpatient

type setting as well.

Robyn: I am like many people in the autistic spectrum in the figure of

one in three who has an accompanying mental health difficulty.

Which is probably to some extent from not having support.

Carloann: Getting onto the first ladder of any kind of support system you

have be either in learning disability, mental health or physical

health. Asperger’s doesn’t fit any one of those little niches they

can’t even get on the first rung of the ladder.

Robyn: I become very anxious about things, and sometimes that

anxiety can spiral out of control. Generally when it spirals out of

control is when I’m all alone at night and I really need help and

there isn’t any. There’s no one I can phone so I have to learn to

deal with it myself.

Carolann: Things have to be really bad before it’s accepted that they need

support.

I can’t think of any services in my county that are offered at all

for people at the higher functioning end. Those with an

accompanying learning disability can have access to all kinds of

stuff which is basically for people with learning disabilities,

which isn’t really appropriate. But for those with average or

above-average I.Q.s, which most of the Asperger guys are,

there’s nothing.

Frazer: The feeling is very much that if one has service in place for

people with Asperger’s Syndrome then going along with that

will be better connections to appropriate housing settings,

appropriate access to in-patient facilities. All the things that go

with a well connected multi-disciplinary expert service.

John: I think I’ve been very fortunate and I only wish that colleagues,

people like myself, in Manchester, Birmingham, Exeter,

Norwich, all over the country would have the same

opportunities because it has made me feel better.

Paul S: It’s kind of like a can of worms. As soon as you have that

diagnostic service people start to realise how many they’ve

been serving all along who met that diagnosis and actually

serving them badly. So peoples’ problems haven’t been getting

better, they’ve been getting worse or staying the same.

Chris A: So we put on actual days where we get groups of people

together and tell them how we got our team, how we

developed, what we’ve learned, what’s gone well, what hasn’t

gone well. That worked well for us because it makes it

manageable. But there’s a lot of interest up and down the

country.

Paul S: It’s unquestionable that this works, just sometimes you need a

weight of evidence behind it before people will believe that it

works. But we know and could tell anybody that it works.

John: Well if it is the job of health services and social services and all

the other services to make people feel better then they’ve

succeeded in me.

Mark L: For many people with autism or Asperger Syndrome they find

that their local authority does not have the services available

that are required to support their needs. So the local authority

will end up placing that individual in a service which is in

another local authority or county council and that can be

hundred of miles away.

Frazer: High numbers of potential out-of-area placements that we’ve

seen and have been reported by other research studies on this

topic have been driven by a lack of investment locally in both

the building, the staffing, the training. The general kind of

provision which would enable more people where appropriate

to be supported at home than is currently the case.

Paul D: It’s very difficult for local authorities because they find

themselves in a starting position where many people with

autism are already placed outside the borough often costing

many millions of pounds a year and there isn’t the critical mass

locally to bring those people back and ensure they can be cared

for in the place where they were born.

It is possible to do that, our experience has shown that it is, and

that seems to be the right way forward.

Nicola: When students disclose that they have Asperger’s on their

UCAS form we immediately follow that up and get in touch with

them in advance so that we’re able to put support

arrangements into place so they can see what support they can

get which will help in them making the decision of which

university to attend.

Carolann: University’s all about growing up and learning and having new

experiences with different people. When you’re Asperger’s and

you find it very difficult interacting with one person how are you

going to get into that circle?

Nicola: Usually we ask the student or suggest to the student if they

would like any support during induction week. We do have

student ambassadors who can be a buddy for the student

during induction week.

Frazer: The key to success in those educational settings is tailored

support. So less generic and more tailored to the very specific

and often very diverse needs of individuals with autism.

Dave: Quite quickly the academic performance of our clients will have

dropped sharply from school to university and many of our

referrals take place because that student is in crisis.

Nicola: Get in touch with tutors who are going to be working closely

with that student, again with the student’s permission, and

discuss that student’s particular support needs and possibly

whether they need any awareness training.

Dave: Support that’s available within the universities is actually very

good. There is definitely an ethos of equal opportunity and a

real acceptance of diversity generally. So in many ways it’s a

very good place for young people with disabilities to be if they

are academically oriented. But even so within those

environments they still find they need that specialist support for

the autism.

Frazer: Where DSA has worked very well is when a social mentor has

been put in place to assist them in their daily lives. It may

include academic pursuits but often the social issues of softer

support and interaction which can be one of the biggest

challenges in the university career.

Robyn: If people say you’ve got a learning support assistant there is a

bit of a stigma associated with that, but if people hear you’ve

got a PA they’re like “Wow! You’re really cool.”

Nicola: I guess the funding remit is really there to help students with

their academic work and I guess the social side doesn’t fit into it

but with someone with Asperger’s it certainly does fit into it

because it impacts greatly on how they approach university life,

on their well being and how successful they’ll be within

university.

Frazer: A social mentor is an option. It can be funded by DSA’s and in a

way it is one of the key ways for people with autism to make a

success of their university career.

Robyn: I often get more tired than everybody else because I’m unable

to filter out information so if I was really tired he was able to go

to a lecture and take notes for me. If there was a genuine

reason for me not being at the lecture because of my disability

he would go and take notes for me and that was really helpful.

He wouldn’t say, “No, you’re just slacking’, because he knew I

was really consciences and cared about my work.

I have access to disability living allowance and that’s been really

good. I’ve had a letter saying I can get that for life, I got that

when I was 16 when I had my adult assessment. But I’m

worried that one day they will take it away from me, it’s been

totally my lifeline.

Frazer: We identified a number of risks and opportunities around

personalised budgets. These were mainly to do with specific

areas of autism which might make managing a personalised

budget quite difficult. I’m thinking of particularly managing

finances personally. Now our recommendation for addressing

this is to ensure on the part of the department via its local

organisations that appropriate services such as advocacy,

advice, brokerage are in place to assist people managing

personalised budgets and realising the potential benefits as

best they can.

Part 4. Improving the effectiveness of services for adults with

autism

 

Alex: Adults with autism of course use a wide range of public

services across the whole spectrum of service provision and

unfortunately there isn’t very much good data about differential

outcomes for people with autism as opposed to people who

haven’t got autism.

Mark L: One of the big challenges for local government, in

commissioning services, is to fully appreciate the need for

individually tailored packages of services for people with

autism.

Robyn: They don’t know how many adults there are on the autistic

spectrum, so how can you be inclusive when you don’t know

how many exist?

Mark L: They get misdiagnosed, so they go down a route of treatment

and support which is completely inappropriate and can lead to

further problems and greater expense. Where as if the diagnosis

was correct from the start it could end up being a far better

outcome a, for the individual but b, for the system because it’s

a much more cost-effective route.

Anthony B: The needs of people on the spectrum tend to be very specific

and we know that outcome for any sort of difficulties is usually

best if people are managed by experts.

Mark D: There is a wide range of bodies that need to come together to

provide services in a tailored and intelligent way.

Mark L: You have to fully understand how their autism affects them and

then tailor a package of support and care to meet their needs

specifically. Because, if you’re at one place on the spectrum,

the package of care you need could look very different to you

being on another place on the spectrum.

Mark D: What works for one individual will be absolutely not what works

for another.

Dave: Many clients over the years who’ve been failed by pan-disability

non-specialist providers and by the time they get to us their

confidence is at rock bottom because they have been referred

to two programmes, three programmes previously that because

it hasn’t been accessible to them, they haven’t been able to

complete, it hasn’t been a success, they haven’t accessed the

work place.

Geoffrey: It’s very clear it is a disability, but it’s not a disability that’s

particularly recognised, certainly not in a work place. Clearly if

you’re in a wheel chair or whatever, society has adapted, but

they’ve not adapted for autism.

Dave: And they’re increasingly resigned to a life without work so we

have to spend the first few weeks picking them up off the floor.

Christina E: It’s about steps towards employment, and what’s not being

recognised is how long those steps take but also how valuable

they are. So somebody catching a bus for the first time, how do

you measure that? You know it doesn’t look that good on a

piece of paper they caught a bus. But for that person it not only

means they can get to work, they also meet up with friends for

drink after work on a Friday.

Helen: For us, employing someone with AS is a business driver, it’s a

competitive advantage for us. We get access to some amazing

skills. The Prospects candidates that we’re seeing are hugely

well qualified.

Christine E: Without the passion of the staff and a service that is geared

towards the individual I don’t think you’re going to do anything

more than go through the motions. It really is about listening to

the individual and the carers and the people who know them

best to try and match them with something.

Helen: If we can just create the right environment for them to flourish

then we’re getting amazing people delivering amazing things for

our business.

Christina E: We’re not just saying to employers it’s a charity. It’s about

finding them good-quality staff who can do the jobs. They just

need a bit of adjustment first.

Sarah H: People working at BT who have sons, daughters, nieces, and

nephews on the spectrum at least know that in the future there

is a very good chance they will be employed in a corporate

environment and have an opportunity to do well. From what I

understand talking to other people that is the biggest fear of

parents.

Anthony B: It’s good enough for people to be warm and well fed and out

trouble and that’s overlooking the many strengths that these

individuals have. The diverse ways they can contribute to

society.

Robyn: I would have a better understanding of myself and I wouldn’t

have been in some of the situations that I’ve been in, and

they’ve had knock on effects on my mental health and that’s

obviously cost the NHS money and could potentially cost a lot

more money in the future.

Anthony B: Regular review, regularly pushing the bar a little bit higher until

the individual is in the optimum niche for them.

Alex: The strategy has to be joined up across employment, across

health and social care services and across education services.

Financial benefits to individuals and to their families would

come principally through more employment opportunities. Both

for people with autism and also their carers who are able to

spend more time in work as well as reduced family incidental

costs.

Paul D: We’ve got a pattern here of dealing with people with all

disabilities but also autism as though they are partners and co

producers in the services that are delivered and put in place

and the services they themselves commission with their

individualised budgets and I think that is the major trend for the

future.

Anthony B: The benefits are huge. In purely monetary terms if people are in

employment they’re paying taxes, they’re not claiming benefits.

If they’re living independently it means their families can get on

with the rest of their lives and are not worried or providing for

adult offspring.

Christina E: People become more independent. Once they’ve got their own

flat, their own front door key. Even though you have to put in a

high level of support, particularly at certain times but peoples

needs change.

Anthony B: If their difficulty is appropriately recognised that’s the best

strategy for preventing them from getting into difficulties that

they otherwise wouldn’t have got into.

Christina: It’s got to be something that’s ongoing otherwise it won’t be

sustainable. Peoples’ health changes, circumstances change,

and there needs to be acknowledgement that support is

ongoing throughout but actually will in the long run, be cheaper.

Mark D: We wanted to explore the value for money of reconfiguring

those services in a way that better meets the needs of

individuals, and therefore improves the quality of life for those

individuals - but in so doing actually identifies ways in which we

think value for money savings can be achieved.

Alex: It’s important therefore that the Department of Health and the

other departments build on the work that we’ve done in the

autism strategy to determine how that specialist provision could

be provided more widely around the country and hence the

benefits that will flow from it could be realised.

Recommendations and conclusions

 

Mark D: Our report makes a series of recommendations which we think

are well evidenced and practical ways forward. I think

importantly in this case the Department of Health are

themselves working on an autism strategy at this point in time

and I think that is the appropriate vehicle to take forward those

recommendations and we would hope that the work we’ve

done and the recommendations we make will help inform that

strategy and improve and develop the design of services as

they go forward.

Rowena: We recommend that organisations responsible for delivering

services for adults with autism need better awareness of the

numbers of people with autism that they’re supporting and are

in their local areas to enable them to plan and deliver services

more appropriately and to be able to measure the effectiveness

of services they’ve commissioned.

Frazer: We recommend that service providers need a better

understanding of the range of needs that people with autism

might have, and that would enable people making decisions

across a wide range of public services to better identify and

meet the needs of that group.

Alex: Support delivered through multi-disciplinary teams with

diagnostic support and then ongoing support after diagnosis

would not only lead to improved quality of life for adults with

autism and for their carers but would also deliver financial

benefits down stream.