I have been asked quite regularly, particularly lately, how did I know that something was not ‘normal?’ In better terms, how and when did I realise my daughter was not developing in a neurologically typical way?
I have been ‘avoiding’ this part myself as I feel that it’s such a long story, where do I start? How do you pinpoint every moment when you see flickers of something that you are unable to put a name to? So here goes, I’ll start at the very beginning…
When my daughter was a baby she used to laugh ecstatically, happy and secure, alert and always looking for the fun in everything. However, a very early sign of her being ‘demand avoidant’ was when she drank milk. She often pushed the teat out with her tongue when another adult tried to feed her, yet I would take her and suddenly she would happily drink her feed. This became an ongoing joke that she liked ‘mummy the best,’ little did I realise at that point that it was a glimpse of what was to follow.
She was able to walk at one years old, but would refuse to let go until she was 16 months old. You would call her name and she would just look at you, look past you as if she was ignoring you. I have later come to understand this as being ‘impassive in infancy.’ When she ‘decided’ to let go at 16 months old she was so proficient at walking that she started running very soon after. It was almost as if she had the skills to do it but lacked the confidence to follow it through. As I am learning about her now, this is very reflective of her approach to everything. At the time we made jokes about the stare she would give you – family would refer to feeling like Rodney in Only Fools and Horses when Del’s son Damien would give him a non-forgiving stare.
Moving on in time and she started pre-school and she hated it. She would scream for me and hated being left, she would dis-engage with staff members and aged 3 she would come home saying “I hate her, my only like the teacher in the other room.” She did not connect with the other children and instead clung to a key worker that she chose, who was not hers. At the end of the session she played in the garden and was content. I put it down to a normal ‘separation anxiety’ and that time away from me was for the best.
She was very strong willed and at times could exhibit challenging behaviour. This usually occurred if I finished an activity and took her home from somewhere, e.g. her grandparents. She used to scream, kick, cry, hide and then force herself to be sick or urinate in the car journey home. I decided to try a behaviour management course as I felt frustrated and confused. I knew that I was consistent in my approach, was firm and fair, always following through with consequences. I had boundaries and good routines, yet these things did not work. I was bewildered but kept going and traditional methods only made things worse.
Next step was nursery and she started with her cousin. They would run off to school together following their older cousin – excited to be one of the big girls! However, the cracks started to appear – an incident form came home in the first term and she had been oppositional to the nursery manager “my going to poke you in the eye!” The manager had a great style and worked well with her, she responded well and then she started to flourish. Change over of staff happened and it was end of the Christmas term, resulting in my daughter refusing to go in. This was starting to be a pattern and happened after every set of holidays. A few more incident forms came home this year but overall she coped. I’ve later realised that her cousin was her safety blanket (as well as being in a more play-orientated environment), which meant that she was able to cope.
The safety blanket was soon pulled away and she did not get a place in the reception class – resulting in her changing schools. Until this point we had managed quite well and as much as we had experienced incidents or ‘emotional overloads,’ she was still a very happy, charming and polite young lady. This was to change and we entered our crisis point.
She refused to go to the new school but somehow we managed to get her there. She would cry a lot in the day, I later found out she would settle but then as soon as they moved spaces or activities then she would cry again. They found her hard work but she made a few friends and started to carry on. Things came to a head when the TA would cover the class teacher and sit them on the carpet. She would disengage and ignore the instructions, then slyly start pinching the children around her. She was in distress and in fact the behaviour was just the tip of the iceberg.
Unfortunately, I was pulled in by the class teacher and told I was ‘overcompensating.’ I cried and begged her, “I think there’s something else!” but my pleas were dis-reguarded and put down to bad parenting. I was pulled aside by parents, “did I know what was going on and what was I going to do as a parent to deal with it?” I felt low and spotlighted, my daughter became violent at home and we had entered a vicious circle.
A place coincidently came up at the previous school and we thought maybe the move back to her preferred school would improve the behaviour. On leaving, the Headmistress emailed me, “Good luck curbing her behaviour traits.” I knew our situation had been misunderstood and it was a move that I’ve never regretted – as a parent I felt vulnerable and unsupported. The onus from the email was that the behaviour was rooted in my parenting which they had never seen but had ‘assumed’ was the cause.
A few weeks into the move and we were over the honeymoon period, behaviours were repeated and then she went back to school refusing. The teacher and TA tried their very best with limited resources and she was put onto a reduced timetable – for a while she only came in at lunchtime. This gradually increased until she was doing most of the mornings through reception and into year one. We entered a continuum of school refusals, violent outbursts, exclusions and re-integration meetings. We all crashed and could not see a way out. Her coping strategies ultimately meant that she could come back home to me – a place she wanted to be and in her red mist she would attack staff/children or damage property. Her ‘fight or flight’ response system was continuously being used and she attempted to escape from school premises putting staff into a very distressed position.
After a few weeks at the school I was called in to see the head to discuss her behaviours. This began to happen regularly and a problem was now apparent. I suggested the word ‘autism’ and it wasn’t felt that she fitted this profile, although I was supported to follow this if I felt that it was the case. I dismissed the idea until I was on a training course for Autism some months later which mentioned about girls and how as a society we may have false ‘preconceptions’ of autism. I sat engrossed in the seminar, holding back the tears, knowing deeply that my concerns could be realised. I approached the trainer and mentioned a few of the behaviours that she had done, one of which included tapping a baby over the head when it was crying to see what would happen. The trainer encouraged me further to investigate as it ‘could’ be reflective of a social communications disorder.
We asked for a referral from our GP to the local child development centre and was put on a waiting list to be seen. In the mean time she was barely at school and I prepared work for her at home in order to teach her myself. She said very alarming things at school such as wanting to hurt herself with scissors or that there were monsters in her head, etc. A referral was made for a CAMHS assessment (Child and Mental Health Services) but it was refused. I was encouraged to attend a behaviour management course instead. I was bewildered and frustrated, I had to fight and fight until it was accepted. Something I am glad I did as the psychotherapist is a very knowledgeable and supportive professional who has helped to implement some fantastic strategies. She has attended our TAF meetings (Team Around a Family) loyally and I am very grateful for her support.
It was about this time that I began researching further around the word ‘Autism’ and felt that it didn’t completely fit my daughter. I bought books on anger management and tried to find the triggers that made her angry – although they were often hidden. Finally I came across the profile of PDA (Pathological Demand Avoidance) and I had the light bulb moment that so many parents talk of. It was as if the words were written to describe her personally. I suggested this sub-type of Autism to the school and it was unheard of. They researched further and completely agreed we had a match. In comparison to other parents, I know that I am lucky that school backed up my findings. The tricky part was now the ‘educational handling’ of her.
A referral was made for an EP (Educational Psychologist) to observe her at school. This was also refused. Again, I fought until this person became involved. A report was written to advise her EHCP (Educational Health Care Plan) of her needs and objectives she could achieve. The headmistress and myself had to tweak many of the aims/objectives as they were written for typical ASD strategies, which had already been tried but in fact made the situation worse. We had a report from a professional but it did not fit her needs.
She was finally seen by the Paediatrician and his findings were although she showed no obvious traits in the clinic, the history strongly suggested a communication disorder, which pathological demand avoidance may be an underlying issue. He told me this was only the second time in his career that he had done this (and he retired the month after!). However, he felt that it was in best interest of the child and he knew he would get eyebrows raised as Hertfordshire did not formally recognise the syndrome. His advice was for the school to begin using strategies for PDA as her disability was already affecting her education.
It would be good to mention at this point how she was doing academically and at home emotionally. Her school levels never increased and she was falling behind her peers. This was frustrating as she is a very bright girl but due to her anxiety she spent more time actively avoiding demands, often with a formal/informal exclusion. When she came home from school she would scream and cry or lash out at me or her sibling. She would smash up rooms, throw objects or attack as hard as she could. I would be left with no other option but to restrain her until the overload had passed. Her sleep became an issue, she was unable to follow the demand to use the toilet and she said she hated herself, that she was ugly. She wanted to get rid of her brain. I would never wish any family to go through what we did through this desperate time.
I fought once again to be seen by the Paediatrician as we were still waiting for an ADOS to be formally assessed for Autism and after many complaints we were given an emergency appointment. In October 2016, still aged 5 she got her diagnosis of ASD with extreme anxiety and some wording towards being demand avoidant (this was something I had to really battle). The Paediatrician pointed out that anxiety was often prevalent in girls and this could just be how they present. She dismissed PDA as not a recognised profile within our county.
Back to school and a suggestion was made for my mum to be a presence in school to get her in and this began to work – she began to settle after ten minutes instead of the hour it usually took. Slowly my mum began working voluntarily as her 1:1 in class and with a familiar, safe adult she began to finally engage in learning. Taking part in phonics and maths, sometimes even PE – I cried with happiness at such small steps. I will be eternally grateful for my mum in this process and I don’t know what we would have done without her.
We put in an application for my daughter to get exceptional needs funding so that she could have a 1:1 teaching assistant to help her. We had accumulated enough evidence and finally this was successful. It took the school a few months to find somebody but this support is now in place – it is a very big challenge and a path that will not always be smooth. However, after a few weeks the staff have described her like a different child, with far less incidents and even succeeding to win star of the week – even though the excitement sent her back to being unstable!
There have been a few important people who have helped to fight this battle and support our family, starting with the GP who has been relentless in her referral process, she was the first person who really listened to me. Also we have had much support from the local pupil referral unit with outreach support as well as therapeutic support for myself. They were successful in getting training for the unit (and key staff in affected schools) on PDA and are doing great work. Next is the communications team for Herts who have researched more bespoke educational strategies for the school to use following the PDA profile. The difference it makes when the syndrome is correctly identified makes a huge step in the right direction to be awarded the appropriate support. I have often said to people I am so tired and drained for fighting for support, I simply just want to be a mum.