The provision of social care for adults at the more functional end of the autism spectrum has always been somewhat spotty. If you’re at the lower end – with classic or Kanner’s autism – there’s plenty of help and support, but those of us with Asperger’s Syndrome face a lottery.
You see, as far as care services are concerned, AS falls between the Mental Health Team and the Learning Disabilities Team. It is not a mental health disorder, but then nor is it really a learning disability – it’s a developmental disorder. Nevertheless, autism tends to be within the Learning Disabilities Team’s remit – but they only get funding to deal with the lower end of the spectrum. In terms of care, then, if you have Asperger’s Syndrome there’s nothing the care services can provide.
You are, however, assigned a social worker – well, sometimes. But herein lies another problem. The team to which you are first assigned is the team you’re stuck with. I was first assigned to the Mental Health Team long before I was diagnosed with Asperger’s; as soon as I was diagnosed, I was discharged by the psychologists, psychiatrists and counsellors, but kept the social worker from the team. And as I said before, Asperger’s isn’t a mental health problem and most social workers I’ve met are gobsmacked when they meet me to find I’m not Rain Man. Different end of the spectrum, guys. Thanks for joining us.
The job of the social worker is to give the service user (i.e. me) access to services pertaining to their condition. Since, as I said, there are no services for adults with Asperger’s, this access takes the form of money that can be used to buy support from private care agencies. I was deemed to require six hours of support each week, so they decided to fund me for three, and I pay for the other three. Thus three times a week, for two hours at a time, I have support workers come in to make sure I’m carrying out my activities of daily living – changing my clothes, cooking, cleaning, etc., and to help me with paperwork, budgeting and the various minutiae of modern life I’m thoroughly incapable of coping with.
This is the way it has been for around seven years now. However, things have changed lately because of the arrival of my little bundle of giggles and poop, otherwise known as Izzie. As regular followers of my blog will know, my partner Lizzie (yes, I know it rhymes and in hindsight it’s quite confusing) has struggled with the demands of motherhood. Like me, she has six hours of support each week, and also has a social worker from Mental Health. Since things were so tough over the first six months, we asked for additional hours just to help us out until we managed to find our feet again. Here is the response we received, paraphrased and dramatized:
‘We’re adult mental health social workers. Neither of you has a mental illness. We’re not even sure why we’ve been assigned to you. Unfortunately, you fall down the cracks between Mental Health and Learning Disabilities.’
But it’s not our fault what we have doesn’t fit into your organisational structure. What we’re asking for is additional funding for more hours for assistance. Because at the rate we’re going, we’ll end up with mental health issues.
‘Well, here’s the problem. We don’t deal with children – we only deal with adults.’
But we are adults. Adults who are asking for help.
‘The thing is, before the baby arrived you were both stable on six hours a week. The disruption in your lives has been caused by the baby. Therefore, if you need extra help because of the baby, the baby will have to fund it.’
I’m not sure I understand.
‘Being a parent is not a mental health problem. If you want any assistance, Izzie will have to get a social worker, and be assigned funding from Child Services.’
I see. So will you refer us?
‘I can give you their number…’
To cut a long story short, we applied to get a social worker for Izzie, to get us extra help as her parents, but as she’s at no risk of abuse or neglect, we were turned down. So, no help there.
Another avenue explored was the Perinatal Mental Health Team. Lizzie was assessed by them, and they concluded her difficulties were caused by her autism, not by postpartum depression, and since autism isn’t a mental health problem, they can’t provide any assistance. So if her autism is causing the problem, who can we go to for help with that? Apparently, nobody.
You can now perhaps understand something of our quandary. We have autism, and despite the joys of the past six months, it’s been a real struggle. We are not the same as every other parent, even though I like to pretend we are, but we’re too high-functioning to get any help from public services, too attentive to Izzie’s needs to get access to child services, and not suffering enough mentally to get extra funding.
To add insult to injury, we have just been summarily dropped by the one piece of free support we were receiving. Since I work Tuesday afternoons in a charity shop, and Lizzie struggles to cope at home on her own with the baby, we had an outreach worker from the local children’s centre who would come out and sit with them for an hour. It was useful and we were grateful for it.
We didn’t hear from the outreach worker after the festive period until she texted on Monday 11th asking to come out either Wednesday afternoon, Thursday morning or Friday morning. Since Wednesday afternoon Lizzie was out with her mother, Thursday morning she takes Izzie to baby group (which is beneficial for mother and baby both), and Friday morning we have swimming classes (which cost £110 a term), we said we were busy. Besides, wasn’t the whole purpose of her visits to sit with Lizzie on Tuesday afternoons?
So she texted us again Tuesday just gone to tell us that they are closing our case because we have ‘disengaged from the process’ and failed to make ourselves available and haven’t kept in touch and if we ever want any help from the children’s centre again we will have to get Izzie a social worker and be referred.
This has left us both feeling perplexed and upset, principally because we have no idea which ‘process’ we are supposed to have disengaged from, but also because we don’t understand why we should have cancelled a Thursday morning Mother and Baby group or Friday morning swimming lesson when the whole reason she was coming was to sit with Lizzie for an hour on Tuesday afternoons? Furthermore, the wonderful invention called the telephone could have resolved whatever issues they had with us – what’s all this text message crap?
They clearly have no idea about autism. We like routines and we cannot abide change, so we make plans and stick to them – disruptions to our timetable make us agitated, anxious and insecure. When plans change you feel small and scared, but you can’t rationalise it away because there’s nothing you’re actually afraid of. It’s simply a general, all-pervading fear that all is not right with the world, a feeling of danger and fright when there’s nothing coming for us – just shadows in the dark. That’s why we don’t change plans at the drop of a hat. If people understood that, it might make things easier.
It reminds me of the time before my breakdown, before my diagnosis, when I was climbing the walls and my thoughts were tearing me apart. I was referred to a psychiatrist under the mental health team. But I wasn’t opening the post – I hadn’t for six months – so when they sent out the appointment by letter, I didn’t open it and I therefore missed it. So they discharged me with the stipulation that if I was referred again I would go to the back of the queue. I only discovered this months after my breakdown when I finally had the energy to face up to opening the huge box of post my parents had kindly collected from my flat. How different things might have been if someone had actually picked up a phone. And how switched-off to the realities of mental health do you have to be to send someone an appointment by post when it said in the referral that he doesn’t open it?
I honestly think that, going forward, we’ll be better off as a family without the interventions of any of these social workers, care providers or so-called experts. The other day, when Lizzie was feeding Izzie during a support session, Izzie choked. We’ve just started her on food with a coarser texture, and choking is par for the course during weaning. The support worker even said that it was entirely innocent, normal, there wasn’t too much on the spoon or too much in her mouth, it was just one of those things. But she still felt the need to report it to her manager, and have it logged that on this day, at this time, during weaning our baby choked. Everybody is just looking for you to fail, and covering their arses in case you do, and that’s not an environment in which I want to raise my child.
Ending on a positive note, the past couple of weeks Lizzie has been so much better, it’s like she’s a different person. She’s far more attentive to Izzie’s needs, supports me more than she ever has, and is suddenly settling into the role of motherhood. And I have finally made peace with the fact that bedtimes and overnight is my domain, because Lizzie will never be capable of getting up in the night. We have different roles to play and given how Izzie is far ahead of the curve in almost every respect, we’re playing them damn well!
It’s just a shame it’s been such a struggle to get here.