My son has a diagnosis of high-functioning autism.
He's just turned 20.
For the last two years, he's been living at home, after dropping out of the local college in 2016. He steadily became more and more anxious in the 15 months he attended college following leaving school in 2014. He had what we now know was a breakdown during this period. We received two tranches of Mental Health intervention during the summer of 2016 and the autumn of 2016. During the last year of high school, he was managing to get to and from school by himself, but since his breakdown, he's not ventured out by himself, but will go out for walks and to the shops if he's accompanied. It is clear he's far from over his anxious state of health, although at least we have periods of him laughing and singing and overall his moods are more stable.
As many people with ASC know, anxiety seems to be par for the course. He is adamant that he doesn't want to return to college. I am adamant that I will never make him do anything that sets him on a course that he's been on for the last two to three years. I think having been through it, my wife and I know what the telling signs of anxiety are in our son (although, we do still get things wrong).
I've been teaching him alto saxophone for about a year now. We went busking last summer and we plan on doing the same this year.
I've read that only 15% of people with ASC ever work, in either paid or voluntary positions.
Does that sound like you?
At the moment, there is no way my son could do even more than a couple of hours work (work, being defined as something he'd rather not do, given the choice). He frequently during the day needs time to 'do his stories'. These involve him talking to him self in an animated fashion while reliving or re-making either a video game or anime scenario.
I live in Bury, North Manchester where the provision for ASC is pretty poor.
I'd like to hear some of your stories, especially from parents of young adults of a similar age.
I’m in my early 20s and I have Asperger’s Syndrome which I was diagnosed with at 16. Here is a quick description of my experience of the transition between school and work:
I struggled to cope in school, and changed schools twice from age 13 onwards because of bullying that had started in reception class and unfortunately never stopped for me (even when I moved schools). Through my GCSEs my teachers eventually became accustomed to the fact that my attendance was poor but my ability to pass my exams was not. The school was never happy with my attendance, as it was compulsory for me to be in education, but they learnt that I wasn’t falling behind because of it.
As such, I did manage to study A Levels and I did well in them, though I believe this was only due to the fact that I was already familiar with the school/teachers and they were willing to put up with me not attending their lessons when I didn’t feel able to (due to anxiety/bullying/my low mood etc.) as they knew I would still pass my exams. I hardly think this would have been accepted in most colleges, and if that would have been the case then I simply wouldn’t have been able to study my A Levels that way.
Upon finishing my A Levels I began studying a professional qualification at night classes. This was very anxiety provoking at first - I demanded my mum take me and stay downstairs for months before I finally braved going on my own - but luckily the class was small, I liked the style of teaching, I never had to say a word if I didn’t want to and I learn really well from books (which we were provided with regularly). My teacher later admitted that she wasn’t sure if I was understanding everything at first as I was so very quiet in our lessons, but that when I sat my first exam and got 100% she knew she had no need to worry about me. Again, as I always passed my exams it was accepted when I missed classes because I couldn’t cope with them, provided the work was submitted on time (which was easy to do via email).
A few months after starting my professional qualification I was offered my first full-time job. I had done a small amount of part-time work from 13 years old, but that was related to a sporting hobby I had and so very different to the office experience.
Initially I did well in work and my hours were quickly increased by my manager, however after around a year in my position I began to have significant problems controlling my anxiety. This really came down to how I was being managed and this issues it was causing me given my Asperger’s, so I did disclose my disability at that point. I hoped for some assistance from my employer, but in all honesty they made life worse for me. I will not detail exactly what they did, but it was very cruel, and it slowly broke me. Every day became torturous, but I did my best to push on through - what else could I do?
Long story short, a year later I suffered a mental breakdown from their treatment of me, I attempted suicide, and I was dismissed from my job. That dismissal has led to protracted Employment Tribunal proceedings that are still ongoing now.
So, not a great first experience of full-time work then, and honestly I felt so broken at that point that I thought I’d never manage to work again. That didn’t turn out to be the case though:
Despite my mental breakdown and nearly dying, I still had the gumption to finish my professional qualification in the months following my dismissal. I also sought legal advice and submitted my Employment Tribunal claim. In amongst this, I tentatively began to look for a new job, but I felt so low that every advert I looked at seemed to have some requirement that I wasn’t capable of e.g. ‘must have excellent communication skills’, and this put me off.
5 months after my dismissal I did my first stint of temporary work. It was only supposed to be for a few days, so I felt I could cope with that, but the employer was so impressed with my work that I was asked to work another week there. Whilst encouraging, this proved too much for me at the time and I only managed a week total. My Employment Tribunal proceedings were very demanding of me at this time and I was still feeling extremely anxious in work environment. I certainly didn’t feel ready to go back into a permanent position.
4 months later I was encouraged back into an old passion of mine by my cheerleading coach - coaching young children. It was only 45 minutes a week and voluntary (which meant if I didn’t feel up to it I didn’t have to go), and my coach was aware of my mental health problems, so I felt able to try in such a supportive environment. This really helped me to add some structure back to my life, some social interaction and a positive work experience whilst not putting any pressure on me. I built enough confidence to start seeking a new job in my profession again, though I was careful about what positions to apply for - I needed to continue to build my confidence, not break it.
6 months later I found just what I had been looking for - a part-time role, for a fixed term that wasn’t too long, I could work flexible hours, it was very simple for me given my qualifications and experience, with an employer who specifically caters for individuals with disabilities, including autism. I thought this might just be the right role for me, in the right place. I hesitantly applied as I still didn’t feel entirely ready for the workplace again and I had anxiety after what had happened to me previously. I was invited to interview and managed it okay (I did disclose my Asperger’s), then shockingly I was offered the job!
Just like that I was back in work. Not full-time, but progress at least. Luckily, I found my new employer to be fully accommodating of my needs - nothing is too much to ask of them, though I only require a couple of adjustments at present - and my manager is excellent. I found the work easy as I was overqualified for it really, but I did that deliberately as I didn’t want too much pressure at that time. My employer was so impressed with my work that 4 months later, before my contract ended I was offered a permanent position with more hours, more pay and even better, it had been created with my needs in mind because my manager wanted to keep me that much.
3 months have since passed and I am doing well in my new position. Every day is not easy, and I still don’t feel I would be up to full-time work just now, but I can cope and I do enjoy the majority of my time in work. Further, I have increased my voluntary work to 2.25 hours a week also, and I find it very rewarding indeed.
Now, I realise I am lucky to have found such a supportive employer, but I think my experience really proves that Aspies can flourish in work if provided with the right environment. On the flip side however, we can be extremely damaged in the wrong environment. I think the key is to find something you love, that you are very good at and be very discerning about the employer you choose to work for or the jobs you choose to apply to. It takes patience to find the right fit but if you manage it then it is absolutely worth it.
I am sorry to have rambled on so much, but I thought that a real life experience, showing both the negative and positive experiences of work might be helpful to you. Perhaps your son could try to look at having some sort of career around his story making (I don’t understand much about that I’m afraid, so I can’t offer specific ideas), as that is something that interests him. Maybe there are some local or online courses that could get him some qualifications that could help. Certainly though, he has to have the motivation to study and/or to work, especially as it often isn’t straightforward for us autistic individuals to do so.
I think my reply got lost.
Thanks very much for your detailed reply. You certainly seem to be on the right track finding a sympathetic employer. My son couldn't have done what you've done so your obviously much more capable academically than he. I wish you well in the future.
No problem, thank you for your well wishes.
Academic or not, I like to think that there is something for everyone in this world - it’s just a case of finding the right people and places to help you personally flourish. Though I do truly understand that this is something that is easier said than done.
I just wanted to add on that I noticed you said in you original post that your local provision for ASC is poor and this is the case where I live also. However, I have found a number of the NAS resources to be very helpful (I even went on a course run by them for autistic employees, which was very informative and beneficial to me), so maybe you could try looking on their website or contacting them to see if they can assist you and your son in moving forwards in any way.