Tuesday, 20 December 2016
Today I hit the wall. The wall won and I had a full-scale meltdown. One to rival the intensity of the meltdowns my daughter rewards us with on a (far too) regular basis. Later in the afternoon, I sat down to plan a Christmas cookie baking session with my two offspring to realise that, quite frankly, I was too terrified and emotionally spent to risk such an arduous task. What should be a perfectly delightful way to spend an afternoon with your little ones, instead poses the risk of being screamed at for an hour because you’ve not done something quite right. You’re not sure what that something is, but it’s not right. You know this because you were screamed at the night before, trying to make Christmassy glittery lights and being rewarded with bloodcurdling screams and abuse.
In the spring of 2014, my daughter was assessed to have Oppositional Defiance Disorder (ODD). The path to this assessment was as a result of an ADOS test at a children’s developmental assessment center. The practitioner who did the test believed that her eye contact and social skills were too good for someone with an autistic spectrum disorder (ASD). She suggested that we might need to consider ODD. We were referred for an assessment assessment and the outcome after a questionnaire and home observation was that she had ODD with a high risk of Conduct Disorder (CD). This is the thing that criminals are made of, essentially, an inability to understand the difference between right and wrong. You get the idea – a pretty frightening prospect to face with your little bundle of (what should be) joy.
I call her Miss Mayhem.
It’s hard to pinpoint exactly when our problems started. Documented meetings with healthcare professionals all say around 18 months, but it is likely that it was long before that. When it’s your first child, you really don’t know what to expect. The things she did were no different to the normal (annoying) behaviours of an infant and toddler, but it was the intensity. The relentless frequency. When she was 10 months old, I had a parent meeting with her nursery. The memorable observations were: “she is going to be a genius” and, “if she throws tantrums like this at 10 months, what will she do at two?”. I think about these two statements and it’s very hard not to laugh (a derisive, ironic sort of laugh as opposed to a belly-aching funny joke sort of laugh).
At 18 months, she was extremely difficult to manage. She seemed unwilling to respond to instructions and even simple requests. She was wild, aggressive, she would savage your face if you tried to give her a cuddle, twist your nose, dig in her nails. Toddler stuff, but exhausting nonetheless. My wine bill escalated. My patience was tested to the limit. Eventually, for the sake of my sanity and my liver, I managed to secure a place for her with a local childminder. Two and a half hours of respite each morning, to give me a little time to fix the dents in my suit of armor, ready for the next few rounds with my little vortex of wild emotion.
At first, we surmised that she was just high spirited and strong-willed. She liked things done her (VERY SPECIFIC) way. Lord help you if you got it wrong. The childminder noticed this too. She commented particularly on a little quirk that had puzzled her (with 20 years experience). Miss Mayhem would point at a toy or item she wanted. Even if it was within her reach, she would point at it and grunt and make noises until you passed it to her. Even if you put it closer to her, she would not pick it up, she would point and grunt. Once you handed her the item, she would drop it and start the process over again. I think we’d noticed this from about 8 months and thought it a bit odd. But it was only when an experienced childminder seemed to find it puzzling that we accepted it was indeed a little bit strange. I mention this here because I discovered later, this is quite a significant quirk, something that has cropped up in all the reading I have done.
Most mornings were an epic battle to get out of the house. She didn’t like her shoes. She didn’t like having a coat or jumper on. She didn’t like being hot. She didn’t like being strapped into the buggy. By the time I’d get her coat on, she would have kicked the shoes off. By the time the coat was back on, she would have squirmed out of it again. By the time I had her fully clothed and strapped in, she’d be having a full-scale shit fit, eyes bulging, throwing her weight forward and stepping on the strap between the wheels of the Maclaren stroller. I would walk to the childminder with the stroller tipped onto its back wheels, because the weight of her thrashing made it impossible to push it in the good old conventional four-wheeled way.
Enter sympathetic glances from strangers alongside a metaphorical speech bubble:
“Look at that batshit crazy mother and her poor screaming child over there”.
That’s me, in all my harassed and disheveled glory. Navigating life’s calamities in style, albeit frazzled to the back of beyond.
On New Year’s Eve 2010, aged two, she appeared to be having a night terror. Calamity went to check on her and all hell broke loose. She flew out of bed, face like a possessed character from the Exorcist. Eyes bulging, teeth-baring. The only thing missing was the swiveling head. She started attacking him, biting, scratching and clawing relentlessly. He persistently pulled her off him and put her back into bed, but she kept coming at him, attacking him. A frantic call to NHS Direct as the intensity increased, we feared that we might need to have her sedated. The storm of groundless violence blew over at last. Calamity was covered in bites and bruises and we were left as puzzled as ever.
So many incidents, so many meltdowns, Sometimes happening several times a day. I was reading every single parenting book, super nanny website and literature I could find, trying all suggested methods of discipline, to no avail. Nothing seemed to work.
I recall being in the kitchen when she was around two and a half, thinking ” if having a child is this hard, why would anyone ever have more children?” In thinking this, I faced up to the fact that, just maybe, something wasn’t right. She was under the table screaming at me, refusing to come out, because I had asked her to put her cheese string wrapper in the bin.
It was around the same time that I had dinner with a friend, a social worker who supports adults and adolescents with ASD and other difficulties. She had been on maternity leave at the same time as me, so knew Miss Mayhem from birth. She had spent a significant amount of time with us. It was this friend who suggested that we needed to consider that Miss Mayhem was High Functioning Autistic (HFA). At first, I was a little shocked that she had said this. My husband certainly rejected it, but as things continued to deteriorate, we had to face up to the facts.
Miss Mayhem was a fussy eater, there were only certain foods that she would eat, nothing saucy, very plain and bland foods only.
She rejected most of her shoes.
She complained about jumpers being itchy, even if I bought the softest acrylic.
She didn’t like noise, we couldn’t play music in the house.
When she got hot, she would start howling and panting and thrashing like an injured animal.
A hyper-sensitive sense of smell, when I cooked a little bit (like one floret) of cauliflower into a cottage pie, she called it “the pie that smells of fart”.
Intense dislike for new places, shops were completely off-limits.
She needed to have her own way at all times, she even started dressing herself at the age of two (oh boy, the styling was special). Any departure from the way in which she wanted things done, would result in a complete meltdown.
At one point, out of desperation, if I wanted her to do something, I’d say the opposite of what I wanted. Then I would get the desired effect. Like, “Don’t drink that water”, and then she would pick up the water and drink it. Of course, this was a dangerous strategy and not one we could always use.
Instead, we worked on creating routines and giving rewards when the routines were adhered to. It had been a mammoth battle for us to leave the house each day to get her to the nursery. So we created a routine whereby she wasn’t allowed to go downstairs before she was dressed and had brushed her teeth. Teeth brushing was a nightmare, as was her hair. Styling muse – Albert Einstein. If she managed to get downstairs with her teeth brushed and have her breakfast within a certain time, she would be rewarded with a cereal bar. It wasn’t ideal to brush her teeth before breakfast, but we knew that trying to get her back upstairs would be impossible and could cause a delay of anything from 40 minutes to two hours. Even then, we couldn’t be assured that she wouldn’t refuse to go into the car or buggy.
By the time she was three, things had gone from bad to worse. We could have around six meltdowns per day, all lasting up to an hour or more. She would go wild and trash the house. Because of her refusal to go into time out and the level of aggression, we started putting her in her room and standing outside the door. She would completely annihilate the room. Pull drawers out, fling them across the floor, destroy anything she could. Sometimes she threw herself at the door until her nose bled. She would only stop when she was so exhausted that she would fall asleep.
A Baby Brother
At this stage, I was pregnant with her brother, something which was certainly not planned. We weren’t clinically insane. Dealing with Miss Mayhem definitely left us with little desire to entertain any idea of more children. But, somehow, due to the stress perhaps, it happened. As I was struggling with the pregnancy, I was reading even more, furtively searching for any techniques to control the outbursts. Somewhere I read that you should put the child in a safe place, but allow them something to use to vent their rage. And so, after an episode when she nearly pulled a large bookcase on top of herself, we cleared the spare room. We taped up the drawers and made it as safe as humanly possible without actually padding it. To allow her to vent, as suggested in the article I had read, I left her a very soft, thin, insubstantial flip-flop that she could hit the door with until she exhausted herself. This saved us from bites and bruises for a very short period of time, maybe days, and then, I still struggle to process it, she managed to smash the window with that thin, insubstantial flip-flop. It was probably the force of her hand, with the flip-flop against the glass, miraculously saving her from being cut. Spare room timeout, therefore, was no more. We had no more ideas or solutions.
A couple of days later, the Health Visitor called to inquire about my health and pregnancy. I told her that I was concerned because of the high levels of stress that I was being subjected to by my three-year-old. I told her about the smashed window and the constant meltdowns. Considerably alarmed, she arranged to see me immediately and suggested that we get Mayhem referred for assessments. She also suggested cranial therapy, which, yes, we tried. We were desperate, we were willing to give anything a go. It certainly calmed her down and made her relaxed around the time of the treatments, but it didn’t solve anything.
Somehow, through all the stress and debilitating headaches, I made it through the pregnancy and in March 2013 we brought home a baby brother for Mayhem. All aboard a whole new high-speed super-sized rollercoaster. I had been working through most of my pregnancy. This had given me some respite from all Mayhem’s screaming and meltdowns, but now it was just me, a baby, sleep deprivation, and the wailing banshee.
The day of the long-awaited appointment dawned and I took a perfect little angel to see a doctor about the devil that lives in our house. Charming, responsive, perfect, there must be something wrong with the parents.
Once she’d received her assessment of ODD, we were coached for two months on strategies which are used for children with Oppositional Defiant Disorder. This was in September 2014. The support came at a time when we had been through hell and back after a particularly noxious experience at her first school. We saw a paramount improvement after changing schools, with therapists on board at the same time. However, in March 2015, during her last appointment at the children’s health center, I expressed concerns that she didn’t respond to the strategies for ODD as she should. That she was not “unlearning” the unwanted behaviours in the way that the strategies were targeted to work. In spite of my concerns, she was discharged. If problems persisted, we would have to start the process over again.
In May 2015, I received a message from a friend, highlighting a blog post by Jane Sherwin (author of My Daughter is not Naughty). I thanked the friend for sending me the article but explained that, although it sounded similar, it was not what my daughter had been diagnosed with. However, I kept coming back to the article, and coupled with the concerns I had discussed with the Paediatrician in March, I decided to buy Jane Sherwin’s book.
The minute I opened that book, it read like someone had written the story of our life. Molly, Jane’s daughter was a little more severe in some aspects (like school exclusion), but the behaviors were identical. I was floored. I pulled out all the doctor’s assessment notes and it was all there in the reports. All the indicators of Pathological Demand Avoidance. How had they missed it? Convinced that this was the answer, I scoured the pages of the PDA Society website and was shocked to see that some of the notes I had written in the summer of 2013 (and submitted to the doctors) looked like they had been copied straight off the pages of the PDA Society website.
Utterly perplexed by this enormous oversight by the professionals, I phoned the children’s assessment center and left a message. I asked if the ADOS test my daughter was given would cover the diagnostic criteria for PDA. My call was never returned. We had been discharged in March, why bother.
PDA and Autism in Girls
Over the next year, I read everything I could find related to PDA, trying to manage the rages and tantrums at home as best as we could. She was doing well at school. No-one cared about our home life. The adjustments we had to make. Simple things like not being able to go out for meals as a family. Holidays being hell. I was working (part-time in principal) at the time and my husband was struggling to make up his flexible hours. The amount of time that is flushed away managing a child that resists demands is hard to quantify. Something that should take a few minutes can take an hour. If managed carefully. If not managed carefully, hours. It was exhausting. Juggling work and the Tasmanian Devil in our home, the stress started to take its toll on my health, forcing me to make the decision to take a break from work in January 2016.
With a little more time at my disposal, I began to read and research exhaustively. The most puzzling factor – why was she awful at home, but okay at school? Focussing heavily on this question, I eventually came across recent research relating to girls and autism, including interviews and research by Dr. Judith Gould.
Armed with my mountain of research, in the early summer of 2016, I went to see our GP for a referral to CAMHS. She knew nothing about PDA but agreed to make the referral, referencing my daughter’s oppositional behaviour. And thus, in July 2016, we were rejected and they tried to send us down the ODD route again. Poor parenting. Send us to Family Pathways (again) for parent training (again), because we’re so shit at managing our (very unruly) child. Nevermind the fact that we have another child who displays exemplary behaviour of angelic proportions. We’re just terrible parents.
Sadly, because of the lack of awareness, even by professionals, parents often get the blame. The child’s puzzling behaviour which falls outside of the ordinary parameters of ASD diagnostics leaves them pointing the finger at ineffective parenting. With this in mind, I scoured the PDA Society website for advice and set about tackling the system in a slightly different manner.
First I had to prove that we weren’t bad parents. I contacted a few friends with suitable credentials to write us “references”. People who had spent time with us, with our daughter and who had experienced her outbursts. Two teachers, a psychologist and a social worker (who supports adolescents with autism and mental health problems) wrote letters detailing her outbursts and expressing that we were stable and supportive parents.
Extreme? Weird? Totally. But its what we needed to do.
Equipped with my research and letters, I made an appointment with the school SENCO. “Have you ever had a girl at your school diagnosed with ASD?” I asked. “No” was the response. “Have you ever heard of Pathological Demand Avoidance?” I am certain you can guess the response to that one. However, we are very lucky. Her school has been very supportive, in spite of the lack of diagnosis or previous experience. And this is crucial.
With the school on board, I tackled the GP again. “Please do not use the phrase ‘oppositional defiance'” I implored. “Please reference recent research by the NAS” I urged. “Please reference Pathological Demand Avoidance”, I request.
A few months later, towards the end of the year, we received a referral. Not to CAMHS, but once again to the same Children’s Centre that had discharged us in March 2015. Appointment date: March 2017.
In March 2017, we arrived for our appointment at the Children’s Center, with the same Associate Paediatrician as before, and a speech and language therapist. “She has no speech and language issues”, I tell them. “Are you going to give her the ADOS”, I ask. “The ADOS was designed for boys, ” I say when they confirm. “It’s been updated with the DSM-V,” they say. I refrain from telling them that NAS research indicated that the DSM-V updates are not adequate for intelligent girls with ASD traits. I can bear no more eye rolling and sighs. “Who the hell does she think she is”, to me at least, hangs heavily in the air.
Whilst my daughter undergoes the ADOS test again (albeit a newer version), the Associate Specialist talks to us in the adjoining screening room. She has never heard of PDA. I am appalled, but not surprised.
Not long after the test, we receive the Clinical Observation notes. She does not meet the criteria for ASD the report states. The phrase “oppositionally defiant” is littered throughout the report in Tourettes- like fashion. I had begged all doctors involved to avoid using that phrase. Instead please state that she is demand avoidant, I asked. There is a difference, I had explained.
Naturally, I lost my shit. Enormously.
I challenged the entire report in eight pages of carefully worded responses to each of their observations, stating that they were basing their evidence on the wrong diagnostic tools and insufficient knowledge. I contacted the PDA Society and I asked her to send a diagnostic manual to the Associate Paediatrician involved. A few weeks later, the doctor called me. “Why did you send me this letter?” she asked.
“If I were CAMHS, and I read your report”, I said, “I’d reject the case”.
“I just heard from CAMHS, actually. They have rejected it” she says, but then adds that she will ask them to review it based on my response to the Clinical Observation notes.
Early June 2017 we receive a letter to say that we have been rejected by CAMHS again. My fury is hard to explain. I went a bit nuts . In the nicest way possible. I threatened to get the MP involved, share the story of what happened at her first school. A scenario that might have been avoided if we’d had the correct diagnosis and support.
Shortly after my raging response by e-mail to the (out of office) Associate Paediatrician, I received a call from one of her colleagues who said that they would try again. Something I say triggers a different angle of questioning from this doctor. She is interested in my daughter’s poor eating habits.
A few months later, rigged with additional new information, I return to our GP. This time I am asking for an Independent Funding Request for and an Out of Area Referral to the NAS for PDA testing. Several weeks later, I receive a call from the GP to say that it has been turned down as we had been granted an appointment with a specialist CAMHS division, called SCAAND. She tells me that this SCAAND division, although they do not diagnose PDA, are familiar with it and can provide us with the correct strategies.
So we wait.
At the end of December 2017, our letter arrives from SCAAND with an appointment for March 2018. It gives us hope.
We had been through a few of the most difficult months ever. Hobbled. Limited in our ability to manage the emotional roller coaster of violent anxiety driven outbursts and aggression. Because, as PDA children get older, the demands at school increase and their decline and ability to cope can be rapid. We were witnessing Mayhem unraveling, not just at an alarming rate, but with a ferocious intensity. That broken rollercoaster just waiting to derail.
For our appointment in March 2018, the processes and preparation were infinitely more thorough. Forms upon forms for the five-hour appointment. Sadly, this SCAAND division also has limited expertise relating to Pathological Demand Avoidance. She was assessed using the ADOS again, but this time alongside full cognitive testing. Calamity and I were interviewed for five hours in a different room, one which looked like a scene of an Eastenders police interrogation room.
We have a meeting with the team of psychologists next week. Will they diagnose her with Pathological Demand Avoidance? No. The NHS generally does not cover Pathological Demand Avoidance in their diagnostic criteria. We’re not really sure what to expect. Will we need to go back to the GP for the out of area referral to the NAS? Probably. With a waiting list of approximately two years, our journey is far from over.
Why is the diagnosis so important?
With the right support from an early age, people with PDA can largely overcome their difficulties. The earlier it is diagnosed, the better these children are able to cope. Although PDA is a sub-type of ASD (Autistic Spectrum Disorders), the strategies are different from those used for other autistic spectrum conditions. There is the possibility to get the diagnosis done privately, however, it is unlikely that it will be recognised by schools and it could result in difficulty getting suitable support at school.
For more information, support and advice, refer to the PDA Society website.