The NHS Autism Assessment for Adults in the UK — My Experience
A factual look at the steps I went through (ADOS-2 and ADI-R)
In this post, I share my experience of the NHS autism assessment process for adults in the United Kingdom, which I went through a few years ago when I was 48 years old. I focus on the process itself, from initial thoughts, right through to receiving the final report.
Details about my life, and my reaction to the report, will be covered in another post — this one is long enough already!
Hopefully, it will be of interest to those who are considering getting an assessment. Luckily, I made some notes at the time, which proved useful when writing this — I don’t think I would have remembered very much otherwise!
Things began when I attended a talk on Autism and Anxiety by Dr Luke Beardon. I was there simply to support my girlfriend, whose son has PDA syndrome.
As the talk proceeded, I started hearing more and more things that seemed to relate to my own life. (That’s a subject for another post though.)
Afterwards, I did some online tests which indicated that autism was likely. So I wrote a long email to Luke, seeking his advice. It included the test results, along with several paragraphs of notes containing anecdotes from my childhood. He was kind enough to reply, and it seemed that the best thing to do was to seek a professional assessment — but, preferably, not using the NHS.
I waited a few months, then looked into the cost of a private assessment. When I found out that it would be around £700, I decided that I didn’t need to know quite so urgently, and put it to the back of my mind for a while.
In addition to the notes I’d written in 2014, I wrote a few additional pages giving more information, in an attempt to justify my request. My notes included details and examples of things such as:
‘Why now, after all these years?’
My answer included the difficulties I’ve had socialising since being widowed, and things related to being a widowed parent, such as attending school events without the support of my late wife. We’d done everything together, and rarely socialised with others, so I’d almost forgotten about the difficulties I’d had during my school and college years until I lost her, and had to face the world alone once more.
She said that I was the first adult that she had ever referred!
In April 2016, I had to collect an autism referral form from the GP surgery, fill it in, and return it to them. When I took it back to the receptionist, she opened the sealed envelope and looked at it, right there at the reception desk! (Who needs privacy?!)
In June 2016, I got my autism diagnostic appointment letter. However, rather than being the beginning of the assessment process, it was simply going to be a sort of screening or pre-assessment — to see whether or not I should be assessed!
They agreed that I should go ahead to the next stage if I wanted to — although there would be quite a long wait. Needless to say, I went ahead.
I believe that they offered me a choice of one long session, or multiple shorter ones. I opted for the shorter sessions, to fit around my childcare commitments, and to give me time to reflect, so I could fill in any gaps during the later sessions. It also felt like it would be easier to cope with, if things got a bit too intense.
At the end of December 2016, I received a letter saying that my assessment would not begin until March 2017, due to staff shortages.
Here’s the list of questions that I had to answer. In my case, I had very little information about early childhood, because both my parents died years ago. But that didn’t cause too much difficulty in the end.
Autism Diagnostic Observation Schedule Second Edition (ADOS-2)
My fiancee went into the room with me for the first 10 minutes, but she was sent back to the waiting room afterwards, for the remaining time.
They asked me lots of questions, but I’m quite comfortable talking about myself to strangers, so that side of things wasn’t too difficult. They also asked me to do several activities, some of which seemed quite strange.
One of the activities was for me to place foam shapes on top of a piece of paper which had a geometric pattern. The pattern resembled a sword which had been chopped off.
There were two colours of foam shapes, and I ended up rearranging things so that it was symmetrical. It was very easy to do — I felt like they thought I was three years old. It was at that point that I started to become aware that they seemed more prepared for assessing children than adults; I was in for some embarrassing and patronising times.
Another activity involved me being shown a children's storybook, which seemed to consist entirely of pictures. I had to describe what was going on, and give my interpretation of the story that was pictured. The book showed frogs on lily pads, and it appeared that some sort of alien invasion was going on outside someone's house.
At one point, they put several items on the table for me to look at, while the psychologist was writing. There were a couple of motorbike magazines, a toy with an array of pins that could be pushed to form shapes, a metal disc that was slightly holographic and would spin on the table, some sort of object that looked like a spinner (but with no spindle), a squeezy toy with tentacles, three coloured marker pens, and some sheets of A4 paper. I examined the items, and got the feeling that notes were being made about what I was doing.
Another activity involved me choosing five objects out of a bag, with which to tell a story. I picked a piece of string, a toy car, a paperclip, a piece of foam in the shape of a cube, and something that looked like a slightly broken or cut lolly ice stick.
I used the string as a road, and put the lolly stick across the string like an obstruction. I took a deep breath, and proceeded to make up a story about the paperclip, which I named Clippy, after remembering Microsoft Office from the 90s. The story involved Clippy driving the car down the road to the beach, and damaging one of its wheels on the obstruction. I represented the beach using the sponge cube. After the wheel had been changed, the paperclip finally arrived at the beach. Clippy was a little bit cautious on the way back, in the area where the obstruction had been.
Throughout that, and many of the other exercises, I was cringing inside. But I tried to put on a smile, and do the best I could. Having two children meant that my story-telling skills were probably a little better than they might otherwise have been.
The last activity involved me explaining to the psychologist how to clean her teeth, as though she didn't know. I had to point at imaginary items on the table, including a sink, toothpaste, toothbrush, and a glass of water. The appointment was supposed to last one hour, but I must have talked far too much, because it overran, and was more like two hours in total! That ruined our plans for the rest of the day, and my fiancee did not enjoy waiting all that time in the waiting room. We decided to arrange future appointments for an earlier time of day.
Once I got home, apart from trying to recover from making a bit of a fool of myself in front of strangers, I wondered whether I’d gone into too much detail about my personal life. It certainly took a lot of energy from me.
Details about my life, and my reaction to the report, will be covered in another post — this one is long enough already!
Hopefully, it will be of interest to those who are considering getting an assessment. Luckily, I made some notes at the time, which proved useful when writing this — I don’t think I would have remembered very much otherwise!
Initial Awareness (2014)
It was back in the summer of 2014, when I first became aware that I might be autistic. Before that point, I knew virtually nothing about autism.Things began when I attended a talk on Autism and Anxiety by Dr Luke Beardon. I was there simply to support my girlfriend, whose son has PDA syndrome.
As the talk proceeded, I started hearing more and more things that seemed to relate to my own life. (That’s a subject for another post though.)
Afterwards, I did some online tests which indicated that autism was likely. So I wrote a long email to Luke, seeking his advice. It included the test results, along with several paragraphs of notes containing anecdotes from my childhood. He was kind enough to reply, and it seemed that the best thing to do was to seek a professional assessment — but, preferably, not using the NHS.
I waited a few months, then looked into the cost of a private assessment. When I found out that it would be around £700, I decided that I didn’t need to know quite so urgently, and put it to the back of my mind for a while.
Need for Assessment (March 2016)
After pondering for more than a year, I decided that I just had to know for sure. I’d heard that some people find the NHS assessment route a bit traumatic compared to a private assessment, but I was willing to take the chance. Apart from saving hundreds of pounds, the other advantage of an NHS assessment is that it’s certain to be officially recognised. So I arranged to see my GP.In addition to the notes I’d written in 2014, I wrote a few additional pages giving more information, in an attempt to justify my request. My notes included details and examples of things such as:
- Sensory issues from my childhood, with things like seams in socks, and the sound of fence panels rattling.
- Difficulties processing verbal instructions, and taking phone messages at work.
- Difficulties recognising people, especially if they change their hairstyle etc.
- Difficulties remembering names when first meeting people.
- Taking too many photos, and spending large amounts of time organising them.
- High sensitivity to touch.
- Difficulties in a number of different social situations, including school and college.
- Being bullied.
- Having almost no friends.
- Finding the technical side of work easier than the ‘simpler’ things.
- How it takes a lot of energy to interact with people, and the need for recovery time afterwards.
- http://embarrassingbodieskids.channel4.com/show-information/take-the-autism-test/
- http://psychcentral.com/quizzes/autism.htm
‘Why now, after all these years?’
My answer included the difficulties I’ve had socialising since being widowed, and things related to being a widowed parent, such as attending school events without the support of my late wife. We’d done everything together, and rarely socialised with others, so I’d almost forgotten about the difficulties I’d had during my school and college years until I lost her, and had to face the world alone once more.
The First Step: Seeing the GP (March 2016)
When I finally saw my GP to seek a referral for an autism assessment, I had a total of 15 pages of material with me — I didn’t intend to take ‘no’ for an answer! At first, I wasn’t sure if I would be taken seriously. But after explaining, she agreed to proceed.She said that I was the first adult that she had ever referred!
In April 2016, I had to collect an autism referral form from the GP surgery, fill it in, and return it to them. When I took it back to the receptionist, she opened the sealed envelope and looked at it, right there at the reception desk! (Who needs privacy?!)
In June 2016, I got my autism diagnostic appointment letter. However, rather than being the beginning of the assessment process, it was simply going to be a sort of screening or pre-assessment — to see whether or not I should be assessed!
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| Image created by the author, using Moviestorm software. |
Pre-Assessment (July 2016)
On the day of the pre-assessment, things went reasonably well. They already had all the notes I’d left with my GP. My fiancee went into the room with me, which helped me to feel more at ease, although there were times when I felt a little awkward answering some of their questions in front of her.They agreed that I should go ahead to the next stage if I wanted to — although there would be quite a long wait. Needless to say, I went ahead.
I believe that they offered me a choice of one long session, or multiple shorter ones. I opted for the shorter sessions, to fit around my childcare commitments, and to give me time to reflect, so I could fill in any gaps during the later sessions. It also felt like it would be easier to cope with, if things got a bit too intense.
At the end of December 2016, I received a letter saying that my assessment would not begin until March 2017, due to staff shortages.
Questionnaire (Early March 2017)
I had to fill in an ‘Initial Client Questionnaire’, ready to take with me to the first assessment.Here’s the list of questions that I had to answer. In my case, I had very little information about early childhood, because both my parents died years ago. But that didn’t cause too much difficulty in the end.
Family and Medical History
- Who are the immediate family members or other relevant people (e.g. partner/children)?
- Does anyone in the biological family have Autism Spectrum, Asperger’s syndrome, social or communication difficulties, or any other developmental delay?
- Are there any existing mental health or physical diagnoses and at what age were they given?
- Is there any current or historic use of prescribed medication?
Mother’s Pregnancy & Birth
- Were there any difficulties with pregnancy?
- Was the pregnancy full-term or premature?
- Were there any complications at birth; need for resuscitation / special care?
- Were there any early problems - sleeping, feeding, physical health?
Client’s Developmental Milestones
Age of:- Sitting, Crawling, Walking, Toilet training (day/night)
- Age of first single words (not mama or dada)
- Age when joining 2-3 words (making short sentences)
- Moving from breast to bottle feeding, or from milk to first solids
- Clumsiness; falling, bumping into things, dropping things
- Using stairs
- Dressing self; doing buttons, laces, dressing, feeding self
- Coordination in visuo-spatial tasks (jigsaws, Lego, cutting out)
- PE, catching a ball
- Handwriting and drawing
Education
- Names of schools / colleges / universities attended?
- Grades?
- Did the teachers ever raise any concerns at school? Has there been an educational statement?
- Has there been any involvement from a speech therapist, educational psychologist or other therapeutic health professional?
- Were there ever incidences of being bullied or targeted by others?
Optional additional information
What are the main concerns at the moment?- Social difficulties?
- Communication difficulties?
- Occupational/employment difficulties? (Please outline employment history.)
- Developing independence difficulties?
- Problems with mood?
- Problems with eating/appetite?
- Problems with sleeping?
- Problems with repetitive behaviours?
First Assessment Appointment (Mid March 2017)
Autism Diagnostic Observation Schedule Second Edition (ADOS-2)
(Module 4, ‘designed for adults with fluent language skills.’)
I saw a clinical psychologist, and an assistant psychologist, from the ASC Diagnostic Service.
My fiancee went into the room with me for the first 10 minutes, but she was sent back to the waiting room afterwards, for the remaining time.
They asked me lots of questions, but I’m quite comfortable talking about myself to strangers, so that side of things wasn’t too difficult. They also asked me to do several activities, some of which seemed quite strange.
One of the activities was for me to place foam shapes on top of a piece of paper which had a geometric pattern. The pattern resembled a sword which had been chopped off.
There were two colours of foam shapes, and I ended up rearranging things so that it was symmetrical. It was very easy to do — I felt like they thought I was three years old. It was at that point that I started to become aware that they seemed more prepared for assessing children than adults; I was in for some embarrassing and patronising times.
Another activity involved me being shown a children's storybook, which seemed to consist entirely of pictures. I had to describe what was going on, and give my interpretation of the story that was pictured. The book showed frogs on lily pads, and it appeared that some sort of alien invasion was going on outside someone's house.
At one point, they put several items on the table for me to look at, while the psychologist was writing. There were a couple of motorbike magazines, a toy with an array of pins that could be pushed to form shapes, a metal disc that was slightly holographic and would spin on the table, some sort of object that looked like a spinner (but with no spindle), a squeezy toy with tentacles, three coloured marker pens, and some sheets of A4 paper. I examined the items, and got the feeling that notes were being made about what I was doing.
Another activity involved me choosing five objects out of a bag, with which to tell a story. I picked a piece of string, a toy car, a paperclip, a piece of foam in the shape of a cube, and something that looked like a slightly broken or cut lolly ice stick.
I used the string as a road, and put the lolly stick across the string like an obstruction. I took a deep breath, and proceeded to make up a story about the paperclip, which I named Clippy, after remembering Microsoft Office from the 90s. The story involved Clippy driving the car down the road to the beach, and damaging one of its wheels on the obstruction. I represented the beach using the sponge cube. After the wheel had been changed, the paperclip finally arrived at the beach. Clippy was a little bit cautious on the way back, in the area where the obstruction had been.
Throughout that, and many of the other exercises, I was cringing inside. But I tried to put on a smile, and do the best I could. Having two children meant that my story-telling skills were probably a little better than they might otherwise have been.
The last activity involved me explaining to the psychologist how to clean her teeth, as though she didn't know. I had to point at imaginary items on the table, including a sink, toothpaste, toothbrush, and a glass of water. The appointment was supposed to last one hour, but I must have talked far too much, because it overran, and was more like two hours in total! That ruined our plans for the rest of the day, and my fiancee did not enjoy waiting all that time in the waiting room. We decided to arrange future appointments for an earlier time of day.
Once I got home, apart from trying to recover from making a bit of a fool of myself in front of strangers, I wondered whether I’d gone into too much detail about my personal life. It certainly took a lot of energy from me.
Second Assessment Appointment (Late March 2017)
Autism Diagnostic Interview — Revised (ADI-R)
This time, I went in on my own, and saw just the clinical psychologist; the assistant psychologist was not there. After a few minutes, she asked my fiancee to join us for the remainder of the session.
It overran a little bit, but not too much. (I set alarms to go off on my phone, which helped!)
I took a bit of a back seat, because most of the time seemed to involve them asking my fiancee to answer questions, such as how I behave in social situations. She told them quite a lot, some of which was mildly embarrassing and awkward.
I saw the same clinical psychologist as usual. This time, there was another person there as well, but she was just observing. I think she was a student.
The psychologist asked for details of any family members who she could contact, so I told her about my sister. It seemed that she wanted more information about my childhood.
The questions sent to my sister were similar to those in the Initial Client Questionnaire I’d completed in March, so I won’t repeat them again here. My sister was also contacted by phone.
She explained that in the past, they might have used terms such as Asperger’s or High Functioning, but they do not use those terms anymore.
She also gave me a letter which summarised things on a single page. It contained three paragraphs: Reason for Referral, Assessments Used, and Outcome of Assessment.
Here are the section headings from the report, to give you an idea of the content:
The report contained some surprising remarks and observations, some of which I felt were wildly inaccurate, insulting or even laughable. Perhaps that’s partly due to the fact that I didn’t hold back, because I was worried that they would say I was not autistic — and that would have left me with no explanation for the difficulties I’ve experienced all my life so far.
Whatever the reason, it’s taken me some time to come to terms with the report, but as I mentioned at the beginning, I think it’s best to leave that for another blog post…
Being assessed hasn’t had an obvious or dramatic effect on my life so far, but I’m still glad I did it, because it’s good to know for sure after all these years. And it may prove useful in any possible future employment situations at some point.
It overran a little bit, but not too much. (I set alarms to go off on my phone, which helped!)
I took a bit of a back seat, because most of the time seemed to involve them asking my fiancee to answer questions, such as how I behave in social situations. She told them quite a lot, some of which was mildly embarrassing and awkward.
Third Assessment Appointment (Late April 2017)
Continuation of Autism Diagnostic Interview — Revised (ADI-R)
This was the final assessment appointment. It lasted two hours, making for quite a long morning.I saw the same clinical psychologist as usual. This time, there was another person there as well, but she was just observing. I think she was a student.
The psychologist asked for details of any family members who she could contact, so I told her about my sister. It seemed that she wanted more information about my childhood.
The questions sent to my sister were similar to those in the Initial Client Questionnaire I’d completed in March, so I won’t repeat them again here. My sister was also contacted by phone.
Receiving the Results (Late May 2017)
This was the last time that my fiancee and I saw the clinical psychologist. She told us the results of the autism assessment, and said that I do have an autism spectrum condition.She explained that in the past, they might have used terms such as Asperger’s or High Functioning, but they do not use those terms anymore.
She also gave me a letter which summarised things on a single page. It contained three paragraphs: Reason for Referral, Assessments Used, and Outcome of Assessment.
Final Stages (Late June 2017)
I received the full 14-page report, which went into much more detail than the summary letter. Some time later, I received another letter, discharging me from their assessment service.Here are the section headings from the report, to give you an idea of the content:
- Referral Information
- Consent
- What is an Autism Spectrum Condition
- Assessment Process
- Summary of Diagnosis
- Assessment Results
- Relevant Background Information
- Language and Communication
- Non-Verbal Communication
- Reciprocal Social Interaction
- Social Imagination
- Stereotyped Behaviours
- Compulsions and Routines
- Restricted Interests
- Sensory Processing Issues
- Movement and Coordination
- Emotional Well-Being
- Formulation and Clinical Opinion
- Strengths
- Difficulties
- Recommendations
- Helping to cope with change
- Support accessing health and therapeutic appointments
- Support around emotional well-being
- Communication and interactions
- Assessment of possible need for social care
- Social groups
- Support groups
- Support with possible future employment
- Citizen’s Advice Bureau
- Advocacy services
- Information about Autism Spectrum Condition
- Useful literature
- National/web resources
Final Thoughts
The assessment process wasn’t quick, but I didn’t find it especially traumatic. I think it’s important to avoid masking your true self during the process, although that’s not always easy after spending years doing so.The report contained some surprising remarks and observations, some of which I felt were wildly inaccurate, insulting or even laughable. Perhaps that’s partly due to the fact that I didn’t hold back, because I was worried that they would say I was not autistic — and that would have left me with no explanation for the difficulties I’ve experienced all my life so far.
Whatever the reason, it’s taken me some time to come to terms with the report, but as I mentioned at the beginning, I think it’s best to leave that for another blog post…
Being assessed hasn’t had an obvious or dramatic effect on my life so far, but I’m still glad I did it, because it’s good to know for sure after all these years. And it may prove useful in any possible future employment situations at some point.
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