Asperger’s, parenting and social care

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.

Support for Parents With Autism

This is a long one, so brace yourselves.

There’s plenty of support for parents with autism. There’s also a total lack of support for parents with autism. Weirdly contradictory, I know, but read on and I’ll explain.

While Lizzie was pregnant with Izzie, we received plenty of support on account of our autism. They gave us a consultant at the hospital, sent us to a nutritionist, referred us to the ‘special’ community midwives and introduced us to our future health visitors. We also had an outreach worker from a local children’s charity who visited us every few weeks to make sure we didn’t need anything extra and were up to speed on the processes of labour, birth, and what comes next. Pretty nifty.

The ‘special’ midwives visited us every few weeks in the safety of our own home, and gave us extra time to explain things and iron out any problems. The team was so good that when Lizzie was sent home from hospital because they didn’t believe she was in labour, three community midwives turned up when the emergency shout went out, and two of them accompanied Lizzie in the ambulance.

We had meetings involving social workers, the local autism charity and representatives of the local council to offer their help and support, too. The unborn baby was assigned a social worker and our competence was assessed (and found to be fine). We were given a fake baby to look after for a few days and attended both NHS and NCT courses on pregnancy, childbirth and breastfeeding. The midwife team could support us for 28 days after birth; the health visitors could start from 11; and they’d see us every single day if they had to. Promises were made, support was offered, and our hands were going to be held right through the pregnancy and birth and into the future.

But it hasn’t worked out like that.

The main problem we had before the birth was getting Lizzie ready for her two nights in hospital. As a medically high-risk individual, she and the baby had to remain under observation for 48-hours. Trouble is, they wouldn’t allow anyone to stay with her overnight – visiting hours ended at 8pm and partners had to be gone by midnight, not to return before 10am – and as a highly anxious person with autism, a fear of hospitals and difficulties adjusting to new situations, Lizzie was terrified of being alone, particularly with a new baby.

Various people contacted the maternity unit on our behalf, and we were even given a tour of the birthing suite, postnatal ward, Special Care Unit, Neonatal Intensive Care Unit (NICU), and Transitional Care Unit (TCU) – all of which we unfortunately got to use – but they wouldn’t budge an inch: despite Lizzie not spending a night by herself for years, having six hours of support from the autism charity each week and a hell of a lot more from family, friends, and me, and struggling to communicate when stressed or with strangers, both of which she was going to be, they would not make any exceptions for anyone. The best we got was that the hospital would try to give her a side room on the postnatal ward, or a place in the eight-bed TCU, depending on space and circumstance. So she’d just have to grin and bear it.

As I have mentioned before, the labour and birth were a bit of an ordeal. Lizzie lost almost three litres of blood, the baby spent the first two days in an incubator on NICU and the next two in the special care unit, and then another three on TCU. I would like to say that the midwives and nurses and healthcare assistants were great, and they were, but one deep problem overshadowed that whole week: where was our special dispensation for being autistic?

‘Ah,’ I hear you say. ‘Why should you get extra attention for having autism? Never happened in my day. The midwives and nurses should have been able to support perfectly well.’

And yes, they should. But there are a couple of problems with that.

Staffing is the first issue. They don’t have the time to provide the extra support a person with autism needs. On the Postnatal Ward one night there was one midwife to cover 25 beds – so presuming one baby per child, that’s one person to care for fifty people. And Lizzie was in a side room. Did the midwife have the time to check on Lizzie, explain things to a greater depth, make sure Lizzie understood, and, more importantly, that she had understood Izzie? Of course she didn’t.

Things weren’t any better on TCU. You’d think that with eight beds supported by one midwife and one healthcare assistant, you’d be seen when there was a problem. But one night, it was ten o’clock, the staff had changed over at seven, we hadn’t seen anyone for four hours and my taxi (also named ‘Dad’) was due at eleven. We were worried about Izzie as she was jaundiced and not going to the toilet, and I was worried about Lizzie, who was freaking out, and I’d buzzed three times already, so I went to find someone. It turned out the two staff were feeding two sets of twins, and they told me to wait my turn. Hardly supportive of two desperate and terrified new parents, particularly if they both have autism.

Another issue is therefore understanding. I don’t know if they’ve had training in autism and Asperger’s – they should have done as a result of the Autism Act – but I had to explain to every one of them what it was and how it affected people. They all said the same thing – ‘Oh, if she needs anything, all she has to do is ring the buzzer.’ Even without a three hour wait, the simple fact is that Lizzie isn’t capable of asking for help. She shuts down when there’s a problem, goes into herself and stops communicating. And she pretends she understands things, or thinks she understands them, when she doesn’t. I watched midwives ask if she was okay and she smiled and they walked off when I knew there was actually something wrong. And I watched as people explained things to her and she nodded intelligently and then afterwards said to me, ‘What did any of that mean?’ This is why she needed someone who knew her to advocate for her, to talk to people on her behalf as the support workers and social workers had been doing. But they still wouldn’t let me stay.

Now, imagine you’re a twenty-nine year girl – perhaps not the easiest of things. Imagine you hate hospitals and have had to have counselling from various sources to face up to the fact that you have to spend two nights away from home. You’ll be away from your partner and your regular support network, and in addition, you’ll have the responsibility of a newborn baby that you have to look after alone, without your partner backing you up.

Now imagine that you have the baby, only it’s a terrifying nineteen hour ordeal involving ambulances, blood, screaming and pain, a spinal injection, episiotomy, failed ventouse and forceps delivery. Imagine you then haemorrhage and have to have two blood transfusions, while the baby is rushed off to Intensive Care in an incubator. Imagine that instead of the two days you’ve prepared for, you have no idea how long you’ll have to stay. Imagine that they put you in a side room and ignore you for eight hours at a time while you plod back and forth to NICU, where your baby is being fed through a tube in her nose.

Now imagine you get transferred to TCU after four days, and are handed your baby and expected to get on with it. They’re too busy to sit with you and show you how to breastfeed, so they give you advice and leave. Now that the baby’s not being fed through the nose, she’s desperately hungry, and won’t stop screaming and sucking on your breast even though there’s nothing in them.

Imagine she’s been feeding for five hours, and you’re weak, and sore, and tired, and you haven’t recovered from the blood loss, and you’re in a strange place with strange people and nobody is responding when you buzz. And then they tell your partner, the one who has been standing beside you all day, supporting you, giving you strength, that he has to leave and come back almost eleven hours later.

Now imagine that you have autism.

I think that warrants a little special dispensation.

People with autism don’t like change, and with a different midwife or nurse every few hours, and no consistency from one day to the next, hospitals aren’t designed to be easy for us. With the additional problems with communication, understanding and anxiety, people with Asperger’s Syndrome and other forms of autism really need someone to advocate for them in hospitals. Ideally, a family member or partner should be allowed to stay with them to act as go-between. Hell, I’d have slept in a chair – I even asked to – if it meant I could stay and support Lizzie. It would free up nurses and midwives, provide far better care for new mothers, and be less cruel on people who have just been through a traumatic experience.

But they don’t make exceptions for anyone, apparently.

Once we were eventually out of hospital, we had great support from the midwives and health visitors. Until, unfortunately, a few weeks ago it was decided that as our village sits on the border between Hampshire and Dorset, all the people formerly looked after by Dorset health visitors (like us) must be transferred over to Hampshire health visitors. So the Dorset health visitors have washed their hands of us, but Hampshire haven’t picked us up yet. After seeing the health visitor every week since the birth, we’ve not been seen now for a month. I spoke to Hampshire and they said they’d be happy to see us, two towns over, in a year. So I rang Dorset to say that doesn’t sound right and they told me to speak to Hampshire. Again, for people who don’t respond well to change, to have support and then take it away seems like calculated cruelty.

So all in all, there are great support services out there for expectant parents with autism, and some great support services for parents with autism, but don’t expect to get much support inside hospital, because it all ends at the door. Equally, the provision of services in the community is terribly inconsistent and seems to be dependent on postcode and not need. I guess it’s lucky we’re doing so well, and nowadays don’t really need that much support, but for people further down the autism spectrum, I dread to think what could happen.

The Autistic Elephant in the Room

When you look at your baby it’s impossible not to wonder about inheritance. My daughter has her mother’s eyes, ears, nose, lips, hair and fingers. The only thing she seems to have inherited from the Drew family’s genetic legacy is the bum chin that I don’t even have. And despite being less than a month old, she still has more hair than me.

Luckily, her behaviour is more equally shared between us: she slurps her milk like her daddy, spills it down herself like her mummy, and is as noisy and uncoordinated as the both of us. I imagine the incontinence must come from elsewhere.

When you have autism, and so does your partner, the question of what your children might inherit from you takes on additional weight. While Lizzie and I were trying for a baby we were often asked if we were worried our child might be autistic. Whilst there’s no convincing evidence that autism runs in families – around one in twenty people with autism have siblings on the spectrum – anecdotally, many of us with Asperger’s can see autistic traits in at least one of our parents. So what if we create an autistic child?

As an individual, autism infuses the whole of my being. It is who I am, and my ways of thinking and feeling are inseparable from my condition. The same is true of Lizzie. I love her in spite of her autism, and because of it. We would not have achieved the things we have, in the ways we have, if we did not have Asperger’s Syndrome.

So would I want Izzie to be autistic? That’s an impossible question to answer. If I say no, it does a disservice to all the people I know with autism who would not be who they are without it. If I say yes, I am setting her up for a lifelong struggle in addition to the regular trials and tribulations that come with being human. In truth, whether she has it or not, it doesn’t matter at all. Aspergic or neurotypical, she will be uniquely herself and I will love her just the same and be there to support her regardless.

And yet I keep watching her for signs. You can’t tell below six months, apparently, but I thought the other day, ‘She makes good eye contact, she can’t be autistic.’ We gave her a bath for the first time last week. She sat in silence until we wet her head when she absolutely screamed the house down; I cannot abide anybody touching my head. But she loved her second bath. It’s just too early to tell.

I think it’s only natural for parents to want to wrap their children in cotton wool. Knowing the life I have led, spending a quarter of a century bouncing from misdiagnosis to misdiagnosis, doped up to the eyeballs on various mood stabilising and antidepressant medications, and suffering several breakdowns to boot, my family didn’t want me to have children. There was too much risk the child would be autistic. How would I cope? What if Social Services took her away? What if, what if, what if?

Deep down, I probably don’t want Izzie to have autism: I know firsthand just how hard it can be. But as I said to my parents, by protecting me from the bad things in life they’re also protecting me from the good. If I didn’t have a child, my life would be easier, but emptier; avoiding the risk of things going wrong means you avoid every opportunity to better your situation. And I wouldn’t change having Izzie for the world.

I have to remember this going forward. As a parent, I’d rather Izzie had an easier life and thus didn’t have autism. But perhaps autism would open up opportunities for her that she’d never have without it. It is not for me to say who she ought to become. I just have to make sure that, whatever issues Izzie might face in her life, she knows that her dad is behind her all the way.

Baby Steps

When I was travelling through the wilderness of New Zealand I developed a simple mantra: step, step, step. Soaked to the skin in never-ending rain, tramping uphill towards a mountain pass that didn’t get any closer, with nothing but a cold cabin & faulty gas burner waiting for me, it was too much to think of the end goal. Or the middle goal. Or even the next hundred yards. I could only focus on lifting my foot, moving it forward, placing it down, step, step, step.

Raising a baby is all about the steps. My partner Lizzie thinks it’s about getting through the day, but to me that’s far too long term. Don’t think of reaching bedtime, don’t think of the next three hours. Live in the moment.

As I write this, Izzie is cuddled in my arms with hiccups, looking at me in a confused, mesmerising fashion. When the hiccups finish, will I need to change a nappy, feed her, burp her, settle her to sleep? It doesn’t matter. Right now I’m holding her as she hiccups and that’s good enough.

When the authorities learned that two people with AS were expecting, they assigned the unborn baby a social worker and set about testing our capability to raise a child. How would we meet its social and emotional needs? What would we do if it was eight years old and being bullied, or twelve and struggling to make friends? What sort of things did we witness as children (a particularly leading question, I thought: I witnessed some truly awful McDonald’s adverts, but I’m not sure that counts)?

My answer was that no prospective parent can possibly know what they’ll do so far in the future. We were learning about breastfeeding, nappies, burping, not studying dating advice for teenagers. Like any parent we’ll sort out the baby thing first, then the toddler thing when it arrives, then each stage in turn. And when the baby is being bullied at eight, we’ll have eight years of parenting experience, and be better capable of answering that question than if I made something up now.

They ultimately discharged us, with a view to checking in every so often to make sure we’re hitting the social and emotional milestones, whatever those are. Sometimes I think we know too much, and put undue pressure on parents and children, Aspie or otherwise, to fit into a model of what is deemed ‘normal’. But right now, I’m just thinking of step, step, step.

(And the next step was a nappy change, in case you were wondering!)