Discussion Featured Voice: Karen Lance

In this interview, Karen talks about the difficulties of balancing family and work, and  the challenges her family have faced since one of her sons was diagnosed with autism. On this, she spoke about the difficulties finding her son appropriate schooling, and later employment. She is concerned that education around mental disabilities may be being overlooked, meaning that her son and others are not given opportunities because of a lack of understanding and awareness rather than a lack of capability. For her, progress would be an attitude change amongst individuals in organisations towards greater inclusivity, to recognise the skills and value of neurodiverse young adults. In the interview, she referenced this Economist article. You can also click here to read Mark Vickery’s blog about autism and employment.

Karen: I continued working part-time until I had our third child. It was only a few hours really, and was more out of necessity at that point. But when the third one came along, my husband just looked at me and said ‘I’m exhausted’. We were really fortunate at that time because financially we were in a position where I was I was able to call it a day.

Scarlett: Did you feel that that was a difficult decision to make?

K: I did carry on for four years on a part-time basis, albeit just on the weekends. I suppose it was gradual process, me adopting the stay-at-home-mum lifestyle. I don’t think amongst my group of friends it was abnormal, though I think it would be more so today. I do feel slightly – not ashamed – but sometimes I feel like it isn’t valued. Particularly in today’s society, which is sad – because I can tell you it’s bloody hard.

Then David was diagnosed as autistic, and so from then on his education and everything became a lot more complicated. David was diagnosed on the autistic spectrum after his 3rd birthday. Prior to that we thought we had an absolute genius on our hands. But his abilities didn’t follow the norm. He could recite the entire cabinet of the day, but he couldn’t recognise that he was called David. He wasn’t passing all the normal milestones. So we had that bombshell, and at the time it was devastating because you realise immediately that all the obvious hopes and aspirations for your child are not going to be as you anticipated. Because from the outset everything was a fight. In terms of his education we went to a tribunal twice, but we only ended up in court once, because they kept throwing the towel in and going with our wishes at the final hour. We had to fight for education. We chose to go down the special education route. Whether that was right or wrong I don’t know, but it was a speech, and language and communications specialist, rather than a supportive learning within a mainstream environment.

S: How old is he now?

K: He is 25 now. We tried to keep him in education as long as we could because we knew the world of work was going to be a difficult one. When he started he applied for a few jobs but the interviews were car crashes. He just hasn’t got the skills for even attending an interview in terms of sitting, waiting and going in when someone calls his name. It’s all the subtleties we take for granted. So he applied for a few jobs but we realised very quickly that the nature of the job market, what employers seemed to be looking for was not what David was in a position to offer. We went through EmployAbility which is a government scheme, which has a certain number of roles they can offer through local employers, essentially voluntary experience. It’s for a few hours a week and David got really lucky and has three placements, two of which are at museums.

S: What kind of stuff Is he good at, like what has he discovered he can do?

K: He isn’t very good in face-to-face scenarios. He’s got pretty sound IT skills, and he is very good at repetitive skills – he does not seem to get overly bored by them. The other thing that David has is a real inclination to please. He really does want to do things to the best of his abilities. So that’s why the two museum jobs and the cataloguing work so well. And then he also does an hour at the Cancer Research shop where he goes through the CDs and the DVDs which is a passion of his – he loves music and film. So he does a little bit of sorting and pricing there.

These EmployAbility opportunities are very welcome and take a few of his hours on Monday and Tuesday for the week. But it’s not enough. He’s a young man who spends the rest of the time in his bedroom. For a parent it is absolutely heartbreaking. You know he is really capable of contributing to society in one way or another. There was an article called ‘Beautiful Minds’ in the Economist, which was specifically on young adults with autism and how they have so much to give. 

So with that, last year we started writing letters to organisations locally, which we thought might get his foot in the door. I mean a museum is all volunteers – usually of a certain age. It’s not a very dynamic atmosphere and it’s not going to lead to job opportunities. And that is the issue with the options that they offer. They aren’t long term and they are not realistic job opportunities which are going to lead to employment in the future.

So we sent off these letters and we were lucky enough to get one back from the Royal Surrey [county hospital], from the head of HR who has two autistic boys. It touched a nerve with her. We didn’t get any response to our other four letters. We had a fantastic meeting with her. She recognised what we were looking for. She talked about getting him in as part of their volunteer team, archiving old computer information. She said they had the potential to try and get him some work placement qualifications that may lead to employment. Which was fantastic.

The wheel turned slowly in terms of actually getting him into the office, but then we had twelve fantastic weeks of David going in, really enjoying it. It was just one full day a week, but he really felt like he was making a difference because he recognised the importance of the health service. Then we were told there were changes in the offices that had to be implemented and that unfortunately they couldn’t include David in that arrangement. We were absolutely devastated, but we sort of had to take it on the chin. We wrote a letter to the head of HR to say thank you very much for the opportunity and if anything else appeared we would be very grateful, only to receive a bounce-back – to hear the head of HR had left that organisation.

So we’re back writing letters to organisations. But I think it’s all about attitudes and individuals and wanting to make a difference. Until people do, I don’t think that anything is really going to change.

You read the huge diversity and inclusion paragraphs in these organisation’s blurbs,  but it’s a very one-size-fits-all approach. This morning, we received a response from the university saying they would not be willing to consider David for a job opportunity. They just don’t get it. In the letter we said to them – monetary return is not what we are seeking. It’s about his development. It’s such an altruistic gesture that people need to make with people like David in order to make a difference.

S: Have you seen any change over the time you’ve been doing it?

K: None, really. We have gone through phases. We were thinking about this the other day: when it came to the Olympics when disability and everything was at the fore, it was still all about physical disability. Though it was really good and I’m sure that it was hugely beneficial in terms of raising awareness and understanding of physical disabilities – you do get the impression that strides are being made in that area. But I worry that David and his experiences, these young people are going to get forgotten about, because the mental health issues that celebrities actually speak about will take precedent.

S: Within all of that, what would progress look like to you? What does progress mean to you?

K: I feel you are never going to please everybody, but it’s about making as many people as you can better. Making opportunities for young people is really important. I just hope that at the end of the day they are going to be happy in whatever they choose to do and where they find themselves.