This article is going to be a bit of a rant… but let’s be honest, most of my blog posts are these days. Just in case you’ve not come across the Seeing Double blog before, I’d like to clarify that I’m a young adult with Asperger’s Syndrome who lives with a parent, works two jobs and claims a small amount of benefits to help support her additional needs. I also have a support worker from Creative Support whom I’m supposed to see for three hours a week, but it doesn’t always work out that way. Three months ago I lost my social worker because I started a new job and she doesn’t work Mondays or Fridays. In the past I’ve been under the care of psychiatrists, the mental health Crisis Team and received additional support at school and university.
Lately I’ve been examining neurotypical adults my age and wishing I could be more like them. I’m proud to be Asperger’s, proud to be me, but sometimes the gap between who I am and who I ought to be yawns so wide that I’m scared I’ll fall in and it will swallow me whole. My family would tell you they’re proud of me the way I am. I have one of the most loving, supportive families in the world. My Dad in particular would do anything to help me out. But I don’t want him to help me fill in needs assessments, remind me to take my medication or explain social situations to me anymore. I just want him to be my Dad.
My Mother passed away last year. She’d had cancer for a long time, and although she’d been ill for many years I don’t think any of us believed she would actually die. At least I didn’t. When I have a quiet moment or just need some distraction, it’s nice to go through my memories and reflect on the time we had together. I was so, so blessed to have my mother in my life. But now that I’m supposed to be an adult, there are a lot of things about my childhood I would have done differently.
I was a difficult child. My autism meant I was unaware of danger and would sometimes wander off by myself for hours at a time. This behaviour exasperated everyone, and although I still don’t know why I did it, I do recall wandering being an overwhelming need; something I simply had to do. I struggled to form appropriate relationships with others my age (still do) and it was very difficult for me to express love and affection for my family. Nonetheless, my parents loved me unconditionally and tirelessly supported me with every aspect of my disability.
Whenever my Mother made an official phone call or filled in a form she’d list herself as ‘the primary carer of someone with autism’. It always hurt a little to hear her describe herself that way. I didn’t want her to be my primary carer, I just wanted her to be my Mum. Yet I relied on her for everything. She helped me to fill in benefits forms, helped me to apply for uni, did practice journeys with me when I had to go to a new location, did spelling and grammar checks for almost everything I wrote, encouraged me to socialise, looked after my medication, helped me to stop self-harming… When I had a breakdown in 2013 She and Dad cared for me pretty much 24 hours a day. They both exposed themselves to things that I now understand no one should have to deal with unless they’ve chosen a career in mental health nursing.
I now work part time as a skills mentor for autistic adults, and recently, one of the individuals who I support was discussing the care in the community approach most mental health services now take. He was pretty adamant that it doesn’t work. However, I think there are both positives and negatives to care in the community. In this context, what’s meant by care in the community is that individuals who previously would have been hospitalised are now sent home, looked after by their families and visited by a member of The Crisis Team (mental health nurses) every day. Once the individual has been put in touch with the services they require and their mental health seems to be improving, they are no longer deemed ‘at crisis point’. This means the visits from The Crisis Team gradually decrease until they’ve stopped altogether. Ideally, they’re replaced by other services, such as: therapy, mental health support groups, social workers, Creative Support, and, if the individual is experiencing psychosis, The Early Intervention Team.
In theory, care in the community is a wonderful idea. I’m sure we’d all rather recuperate from mental illness in the comfort of our own homes than in a hospital. But is one short visit from The Crisis Team a day really enough? Who supports that individual for the rest of the day?
I think the reason care in the community doesn’t always work is that:
- Individuals are left feeling unsupported because their needs just aren’t being met.
- Their family and friends end up providing all the support they need, which is extremely difficult to do and puts a strain on the best, most loving relationships. I know I lost some close friends when my mental health was at its worst, and while I wouldn’t necessarily let them back into my life, I don’t blame them at all. I was very difficult to be around.
I wish my mother had been less involved in my mental health/disability related care. But I needed her help so much. And honestly, I don’t think she wanted to let go either. There were plenty of times when I’d say ‘Mum, it’s okay, I can do this with my support worker’ and she’d firmly tell me that Creative Support weren’t allowed to help with that area, so she’d have to do it herself. She was also my business partner for Seeing Double: an organization that she was deeply passionate about, and I couldn’t have set up without her. But despite how much she brought to the business… maybe that was going too far.
Care in the Community can put an enormous strain on the family members of someone with autism or mental health needs. One of the autistic adults whom I support is no longer able to see his parents because they are simply unable to cope with his needs, a situation I’m sure is horrible for everyone involved. My mother often felt guilty about exposing the family to her own illness, describing herself as a ‘burden’ and sometimes expressing a desire to live alone so that we wouldn’t be affected by her cancer. Of course, she wasn’t a burden. She was a wonderful person, and her presence enriched the lives of everyone around her.
As for the support she provided for me… I’m incredibly grateful for it. But I wish we’d had more time together as just mother and daughter. No panic attacks, no sensory issues or disability related support. Just me and her, like all the other girls are with their mums. But I’m not like other girls. And it doesn’t matter whether I accept that for what it is or I tear out my hair in frustration- I’ll never be like other girls.
Growing up, it was (and still is) difficult for me to procure the support I desperately needed. That was partly because I hadn’t come to terms with my diagnosis of Asperger’s Syndrome, and could be pretty resistant to anyone who labelled me as having ‘additional needs’. It was partly because my diagnosis is ‘high functioning’ (a label that doesn’t make a lot of sense given that the suicide rate for people with high functioning autism is much higher than the suicide rate for people with low functioning autism and other disorders). But whenever I asked my Mum why we were struggling to get the right support, she always said the same thing. She said that because I live with my family and am supported by them, my case just isn’t a priority for any non-private organizations.
I’m so, so grateful to have such a caring family. But they shouldn’t be responsible for the huge amount of support that a person with autism (child or adult) requires. Family members should be responsible for loving and accepting someone with autism, sure. But disability specific support needs to be provided by disability specific organizations. Mums, Dads, aunts and uncles aren’t qualified to provide this kind of support, and having to do so day after day can cause fractures to appear in relationships, or even cause them to start resenting the autistic person they’re caring for. I don’t ever want my family to resent me.