My Life With Autism - ESA50

Continuing our series My Life With Autism, our campaign manager Carole Rutherford wanted to share with you her experience of completing the ESA50 form for her son when he migrated from Incapacity Benefit to Employment Support Allowance: 

"The Work Capability Assessment was the only thing that the eldest of my two sons with autism could talk about. We had to endure question and answer sessions about the assessment every time we sat down to eat our evening meal. This started in 2 years ago when my son realised that he would have to be migrated from Incapacity Benefit and onto ESA.

Despite not having any idea about what questions he might be asked my son had a practice run every day of what he would say in response to any question that he would be asked.

My son has Aspergers Syndrome. He also has Keratoconus, which is a degenerative visual impairment. He has OCD, multiple allergies, asthma, he suffers from headaches on a daily basis and has 3 separate skin conditions all of which become much worse when his levels of anxiety increase. He also has extreme sleeping issues. His body no longer works to a 24 hour cycle.

My son has never worked.

He stopped going to school after he was hit by a car while going to school in an extremely distressed state when he was 11 years old. He never returned after the accident. He never leaves the house on his own and even when with someone I can probably count on my fingers how many times he has left the house this year.

After weeks of incessant talking about a Work Capability Assessment, during which time his anxiety levels rose to a level that I could no longer ignore, my son decided that he did not even want to hear those words used in our house. He could no longer cope with even the thought of a face to face assessment with a stranger in a strange environment never mind talking about it.

I spent a year trying to access someone in mental health who could help to support my son. The fact that it took that long for me to find someone who was willing to see my son only underlined how isolated within our Local Authority my son is. There simply were no services that were designed to meet my son’s complex needs. Had he been diagnosed with autism we could have seen someone within a very short space of time, but his Asperger Syndrome excluded him from any services that we did have.

 It was one day back in July (2012) when we received the call from JobCentre Plus. After checking that I was in fact my son’s appointee the Jobcentre Plus adviser was happy to speak to me. I was informed that the phone call was being made just to make sure that my son had received a letter telling him that he was being migrated from Incapacity Benefit to Employment Support Allowance. He had not. I was then read the content of the letter. The letter was quite short and to the point; I was feeling increasing sick and anxious with every word.

I was told that an ESA 50 Questionnaire would follow our conversation and I requested that everything for that point be addressed to myself and not my son. I was assured that it would be.
The ESA 50 arrived two weeks after the telephone call and even though I knew exactly what to expect having read the ESA 50 on numerous occasions on the internet, looking at it and knowing that every answer on that Questionnaire counted raised my levels of anxiety. And so it continued. I cannot remember feeling as anxious as I did at that point. My every waking moment was taken up by the ESA50 questionnaire and it was also the first thing I thought about the moment I woke up.

Answering the ESA 50 was a nightmare. Even though I knew that the questionnaire did not ask questions in a way that was going to make it easy for me to reflect the difficulties that my son has on a daily basis, trying to do just that was probably one of the hardest things I have ever had to do.  It took me three weeks to complete. This is despite being able to access support and advice about the questionnaire. My stress and anxiety levels rose on a daily basis. Just thinking about the questionnaire made my heart race and I spent all day and every day on a heightened state of alert.

The questions simply did not allow for the complexities of autism and I realised very quickly that they did not allow for the complexities of his degenerative visual impairment either.

Finding a way to clearly outline the problems that my son has functioning on a minute to minute basis, never mind on a daily basis, left me feeling mentally exhausted.  I found myself thinking about my answers to the questionnaire all of the time and going back and changing and amending my answers. I became totally obsessed with the questionnaire and found it difficult to focus on anything else.

Eventually I decided that I could make no better of the answers that we had given and so we sent the ESA50 to Atos.  I had read that it could take weeks to hear back following receipt of the questionnaire and it was difficult to keep a lid on my ever growing sense of ill ease.

My anxiety worsened because I knew that our wonderful GP was on holiday at the time the questionnaire was received and then became ill so the request from Jobcentre Plus to supply them with information about my son and his medical conditions would lie in his in tray.

I waited for the post every day and every day the sense of dread increased. I am currently waiting for an operation and I decided to ask if it could be postponed until we knew  the outcome of my son’s transfer from IB to ESA because I knew that there was no way that I could cope with my son if he had to have a WCA post op.

When news finally arrived it came via a small piece of paper that was attached to an ESA 3 questionnaire. The slip of paper read:

 ‘Dear Sir/Madam

As you have been placed in the ESA Support Group following conversion from Incapacity Benefit, you may qualify for Income Related ESA. To claim this complete and return the enclosed ESA3 form.'

The words ‘support group’ jumped off the page at me but as there was no letter with the questionnaire I was not sure that I dared hope that this was really about my son.

The new questionnaire was addressed to me. The day after the new Questionnaire arrived we got a letter confirming that my son was in the support group. It arrived on the same day as my youngest son’s DLA renewal forms.

It is safe to say that I personally heaved a sigh of relief but I also expected to feel as if an huge weight had been lifted from my shoulders, strangely I did not. Maybe because I know that it does not end there. My son will have to be reassessed again at some point in the future.  I also know that he could never handle this process on his own. He simply could not cope. I am not sure that I did.

I have spent the last two years campaigning for advocates to be offered to every adult at the very beginning of the WCA process.  I had an inkling of how difficult this process was for adults with autism and their families, from what I have heard and been told via Act Now for Autism. But not until I took the phone call from JobCentre Plus did I have any idea at all as to just how much the process was going to impact on me and my emotional well being.

If we had had a raft of medical evidence to draw on maybe I would not have felt as stressed out and anxious by the process as I did. But my son, like a great many other adults with autism, was cast adrift from services and support when he was signed off from Children's Services when he was just 16 years old. The whole process really brought it home to me just how much we are failing adults who have recognised communication and socialisation impairments.

Autism is not an illness but it sure as heck impacts on the lives of those living with it, so WHY are we still having to fight for the support and services that both children and adults need? WHY despite having an act of parliament dedicated to autism are our vulnerable adults not being protected and given the support that they desperately need when going into a benefit assessment situation?

As it stands at the moment the Autism Act and the Adults Autism Strategy 'Fulfilling and Rewarding Lives' is not ensuring that adults with autism are able to access the professionals and advocates they need to be able to access at a time when they are in most need."