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.

Three Weeks of Growth

Izzie is three weeks old. Before she discharged us, our midwife warned us about Day 21. Apparently, new mums are the most fertile they’ll ever be today. Not realising this, many women go for their six-week check to discover that there is another bundle of poopy joy on the way. So we had a lecture about women’s fertility that ended with the catchy refrain: ‘contraception, contraception, contraception!’

Can you imagine? You’re just starting to get the hang of buttoning up sleepsuits without attaching the leg poppers to the stomach poppers and you’re back to morning sickness, mood swings and hair-thinning financial worries. Just as you’re weaning one child you’ll be trying to get the other to breastfeed.

I told the midwife she had nothing to worry about in that regard. Energy is at a premium right now and when I get into bed, the last thing I want to do is waste any. Besides, last time I looked down there, in the operating theatre, it was a car crash: I’ll probably need counselling before I have the guts to go anywhere near it again!

The midwife letting us go is both gratifying and butt-clenchingly uncomfortable. As people with ‘special needs’ we had a special midwife, although she was more used to dealing with alcoholics, drug addicts and battered wives than a couple with Asperger’s Syndrome. She was meant to stay twenty-eight days but we’re doing so well she decided we didn’t need the additional safety net. I must admit, I loved that safety net.

Lizzie says that it’s real now, though why she thought it wasn’t real before is anybody’s guess. She says she doesn’t feel like a mum. I know what she means. I have no idea what a ‘dad’ is supposed to feel like, but I expected it to be different than this.

Despite the fact I should know better, I have a weakness for believing external stimuli can cause personal growth. When I was at middle school, ten years old, I’d see the bigger kids walking towards secondary school and think, ‘When I’m that age I’ll be confident and able to cope.’ But when I grew up it was harder still – age is no indication of capability. The same with travelling: I thought if I walked down the street in some out-of-the-way town in a rainforest or desert I’d somehow be taller, and cooler, and better looking. Instead, I was the same old me, only more sunburned and slightly malnourished.

I slipped into that trap with parenthood. I thought I’d become a different person, that as soon as I saw Izzie it would be like flicking a switch and suddenly I’d be mature and wise and capable. Instead, on first seeing my daughter I thought she looked like someone had left a blue sock in a white wash. Then I wondered why she looked Mongolian. I think if I’ve changed, it has taken place over the past nine months and in such incremental stages I didn’t notice it.

I don’t feel wise or capable or mature – when Izzie’s asleep I use her arms to do the YMCA dance – but I guess we must be doing something right.

Lizzie got upset when the midwife left. It being day 21, I told her there’s a sure fire way to have her back in our lives for the next nine or so months. Judging by Lizzie’s response to that suggestion, she’s not that keen to see the midwife again!

Post Traumatic Birth Disorder

All prospective parents are prepared for a number of things: the labour will be hard, the birth will be insane, the mum will be sore and hormonal for a long time to come, and the first few weeks will be a whirlwind of nappies, feeding, screaming and sleeplessness. With a few perks, of course, like being able to say you’re a parent and getting to use a new parking space at the supermarket. Or, if you’re really lucky, that moment the baby pees on your partner and not you.

Nobody prepares you for the psychological aftershocks of the birth itself. Now that we’re starting to get used to parenting – that is, we’ve realised we’ll always have at least one too few hands for every task – we have time to process what happened that day. And I think I preferred it when we were too busy to think.

Every time Lizzie goes to the toilet she has a flashback to the labour. It started 6am when she woke in agony and started vomiting. I ran her a hot bath but it did little to help. We went to hospital, were sent home because they thought she wasn’t in enough pain to really be in labour, and Lizzie sat in another bath and vomited some more. She had a bloody show, started to shiver, and still the hospital told us she wasn’t in labour yet – these were just pre-labour ‘twinges’. Then she started to bleed.

There was no answer from the delivery suite, no answer from antenatal, no answer from the birthing unit, no answer from the community midwives’ office or mobile, no answer from the back-up hospital and no midwife at the local surgery, so I rang for an ambulance.

The single-crewed paramedic panicked the second he saw her, called for backup because birth was ‘imminent’, apparently, and within minutes there were three paramedics, three midwives and two grandmothers crowding around the tub. Lizzie was six centimetres dilated, so they piled her and the midwives into an ambulance and set off with blue lights flashing. This was four hours after being sent home from Maternity, and less than an hour since the hospital had told us they weren’t even contractions.

For Lizzie, this was the worst of the ordeal, and now the bathroom stirs unpleasant associations of pain, blood and fear. She isn’t really bothered about the public nudity, but then pregnancy and prudishness don’t go together. Trouble is, she can’t exactly avoid the bathroom.

For me, I have a single image that haunts me: my beautiful angel Izzie lying alone in an incubator in Neonatal ICU, hooked up to all kinds of monitors, a drip in her arm and a feeding tube up her nose. She got stuck in the birth canal for two hours as she was back-to-back.

Downstairs, Lizzie was recovering from haemorrhaging on the operating table after a failed ventouse and forceps birth. I spent the rest of the night and next day bouncing between the two. At the time I simply did what I needed to do and put one foot in front of the other for forty-three hours. But now, when people ask about the birth, I come to the moment when Izzie went into the incubator and I can’t go any further. I can’t talk about the four days in ICU; the three days in Transitional Care; the day I cried because my girls weren’t coming home; the day Lizzie begged me to stay but they still made me leave at midnight.

So how do we get past these thoughts and feelings? For Lizzie I guess we need to fill the bathroom with happy memories to replace the bad, such as baby bathtimes, or else it’s as good an excuse as any to get a new bathroom suite. And as for me? I just need to hold my daughter as much as I can and assure her she’ll never be alone again.