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Social care: an autistic adult's perspective

In this article Paddy-Joe Moran, an autistic adult, gives his personal perspective of social care. In particular he raises concerns over recent reports of inappropriate detentions of young people with autism, and how this may adversely impact on how many autistic adults and young people seek social care support.

Paddy-Joe is a blogger and, alongside his mother Jane, runs ASKPERGERS, an online advice and information group. Paddy-Joe has also co-authored two books, and recently wrote an article for the Guardian on how to make consultation events more autism-friendly.

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Social care: an autistic adult's perspective

I first came into contact with social care professionals when I was diagnosed with autism aged eight.  My own experiences were overwhelmingly positive. I was helped through a lot of issues that had been going on for years, and the help I got enabled me to get to where I am today.  I found them to be understanding and knowledgeable.  However that's not the experience many autistic people seem to be having now.  So why is this?   Has something gone wrong?   Or is it an age issue?

Autism and mental health

One of the most commonly reported issues is that autism is seemingly treated as if it is a mental health issue. When I was talking to professionals about my autism and how it impacted on me, mental health was never mentioned.  Now it seems as if that's a key focal point when dealing with autism - to the point where some teenagers are institutionalised and medicated for their autism. 

The issues that autism can cause in people's lives can lead to mental health issues, but autism itself is a neurological condition. So when young people are being taken miles away from their families, locked up in institutions or so-called Assessment and Treatment Units, pumped full of anti-psychotic drugs, and sometimes kept in this state for months or even years, what can that really do to help them? How is that meant to inspire more individuals or families to come and ask for help?

Asking for support

As a man of twenty I still struggle with many of the same challenges I did when I was eight.  Not all of them, and not to the same level but I still have meltdowns and outbursts. Not like I did as a child where I would hit and kick, but I can still get very loud, and lose control of myself, punching the wall and shouting.

As an adult I feel apprehensive about going to social care professionals for help with this. I worry now that it will be misunderstood. Firstly, that the autism professional will try and treat it as something it`s not, i.e. a mental health problem.  But secondly, I worry that it might lead to me ending up in some treatment centre for people with mental health problems, being given drugs I don't want or need, and not being allowed to see my family.

Sound over the top?  Well it happens.

Social care professionals

But here`s the thing, I don't mean this to be an attack on social care professionals.  It might sound like it is, and if it does then I am sorry.  The point of this is to say that I know most social care professionals do a good job.  And the likelihood is that if I, or someone else, asked for help, we would get it.  But who is going to want to take that chance?

It might be a case of putting more positive stories of social care out there.  However, the most important thing that social care professionals can do is to deal openly and honestly with any complaints they do receive.  They should be dealt with publicly, and not hushed up.  Even if things go wrong, the professional is still there first and foremost for the autistic person and their family - their role is to do right by them, not to protect themselves, or their colleagues.

However I sense that there is a mistrust, and even a dislike of social care professionals among the autistic community.  This is not good for anyone and it can stop people getting the help they need. But if social care professionals want autistic people or their families to contact them, then they have to make sure that they will be offered the help they need and not the so-called help they have become scared of.

I have had positive experiences with social care professionals, and I talk and write about them often. I will however admit that I don't like the idea of going to social care professionals again and asking for help. Even though I trust some,  I don't trust the system as a whole.   That needs to be addressed, as I know for a fact I am not the only young autistic person who feels this way.  I don't want to attack those who work in social care, I want to work with them, for their benefit as well as mine.

Links to details of young people who have been, or are being, inappropriately detained:

https://www.change.org/p/rt-hon-norman-lamb-mp-please-bring-my-autistic-son-tianze-home

https://www.change.org/p/nhs-islington-bring-my-son-stephen-home-care-for-him-in-our-community-bringstephenhome

https://www.facebook.com/JusticeforLB?fref=ts

Further reading

Moran, P-J, Holding an event for people with autism? Here is what you need to know, The Guardian

Smith, J, Donlan, J, Smith, B, (2008), Create a reward plan for your child with Asperger syndrome, Jessica Kingsley Publishers

Smith, J, Donlan, J, Smith, B, (2012), Helping children with autism spectrum conditions through everyday transitions, Jessica Kingsley Publishers

ASKPERGERS (Facebook)

ASKPERGERS (Twitter)

Author: Moran, Paddy-Joe

Date added: 29 October 2015