Freddie’s Story

Description:

Freddie was diagnosed with Atypical Autism and ADHD just before his 12th birthday. His parents didn’t feel these diagnoses explained the difficulties Freddie was experiencing. PDA had been mentioned to them a few years previously and they adopted many PDA-friendly strategies to help him. Freddie’s family have seen vast improvements in his wellbeing and they now look forward to a brighter future together.

From birth through the toddler years we had a generally happy little boy. Things changed for Freddie as he approached the age of 3. He began showing great distress and having meltdowns whenever we shopped in large supermarkets. Despite taking him immediately to the sanctuary of the car it could still take up to 40 minutes to calm him down. With hindsight we now realise he was struggling with the sensory overload he experienced in the supermarket. At the time we were at a complete loss as to how to help him through these episodes.

Freddie attended a small, friendly primary school and seemed to cope well although he did earn the reputation of being a ‘character’. At the age of 7 he began to have meltdowns at school. He once tried to run away and when restrained he fought his teacher. This prompted us to seek help from our GP. Our request for an assessment was rejected and the GP commented that ‘some children are just plain naughty’. Our official dismissal letter stated that ‘the needs you describe do not meet the criteria for our Mental Health Service’.

From the age of 8 to 10 Freddie attended private counselling sessions in an attempt to work out how to manage his emotions. The rest of the family, including his younger sister, also received counselling to help us better understand his difficulties. After working with Freddie for 2 years the counsellor suggested we investigate PDA as we were still finding his behaviour challenging. For us that was our ‘light bulb moment’. We visited the PDA Society website and also educated ourselves by attending parent workshops.

Secondary school presented a whole new set of challenges to Freddie. Moving between rooms every lesson and coping with numerous teachers was very hard for him. His anxiety would peak on Sunday evenings and he would show his distress and fear by physically attacking us all. This escalated until week nights followed a similar pattern. Sometimes Freddie would use household items as weapons or threaten to kill us while we slept. Our house was being regularly wrecked as Freddie’s meltdowns became more intense. To ensure everyone’s safety we felt it was necessary to lock our knives away. After a meltdown ended it was devastating to hear Freddie berate himself and say he didn’t want to live as he hated it all so much.

Freddie had grown too big for us to restrain safely during meltdowns so sometimes it was necessary to call the police for help. The police were limited with how they could assist us. Following these police interventions, Freddie accused us of assaulting him which led to an investigation by social workers. We were informed Freddie could be removed from our care if we were found guilty. We felt distraught throughout this process and were relieved when after two months we were rightly cleared. Our relief was tinged with disappointment as we later discovered there had been a delay in passing the result of the investigation to us, which had prolonged our angst by a good few weeks.

During February 2016 we returned to our GP convinced that Freddie was on the autistic spectrum. He was placed on the waiting list in Hertfordshire for an assessment. Unfortunately a clerical mistake had been made and after chasing his appointment we learnt it been booked in the wrong county! This led to an even longer delay before he was assessed.

Initial CAMHS findings did not support a diagnosis of ASD as Freddie ‘could maintain eye contact and hold conversations with the paediatrician’. He was discharged and we were told he wasn’t eligible to be considered for an EHCP.

The situation at school continued to deteriorate and Freddie was excluded a number of times. His exclusion was made permanent when he had a meltdown and destroyed equipment. We commissioned a private assessment of Freddie by a specialist teacher with extensive experience of working with autistic children. They agreed he presented with a PDA profile of autism. We discussed ASD and PDA with the school but without an official diagnosis they continually viewed him as defiant and abusive.

The worst moment for all of us occurred in June 2017. Freddie had a meltdown that was so severe we thought our little boy’s mind had snapped. He couldn’t recognise any of us. He ran around the house whilst making bird noises, chanting a rhyme and banging his head against the wall. The police and an ambulance team attended. We gave our permission for a sedative to be administered to Freddie but unfortunately there wasn’t a doctor available to give it. The police and paramedics bundled Freddie into the ambulance and I accompanied him to hospital. He spent the next few hours slipping in and out of consciousness. When he did wake he was imagining monsters under his bed. He finally slept and by morning he had thankfully recovered.

After this terrifying experience we received immediate attention from CAMHS. Freddie was diagnosed with Atypical Autism and ADHD, although we remained convinced that a PDA profile of autism better explained Freddie’s presentation. He continued to have violent meltdowns and we decided to request anti-anxiety medication for him. Eventually CAMHS agreed and that is when our world started turning around.

Our terrified, super-anxious little man received his EHCP which allowed for a 1:1 teaching assistant. He started appropriate medication and with the right support resumed mainstream education in September 2018. He has never been happier. He has an aptitude for computer science, writes ‘A’ Level standard English essays and has made a few friends! We have occasional issues but when they arise his school are keen to work with us and help him to reach his potential.

As a family we don’t place any demands on Freddie and allow him plenty of choice instead. We have also lessened the demands placed on his younger sister and accept that both of them don’t carry out general chores or tidy their rooms. Freddie is likely to become anxious leading up to exciting days out so we allow him more time to get ready and never pressure him to hurry up.

Freddie is a very loving and bright boy who faces his anxieties daily. He wants to go to school, learn and make friends. He loves drama and performs yearly with a youth theatre. He isn’t naughty or defiant, he has a hidden disability.

 

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