One of the most moving, inspirational television programmes that I have recently watched, was the one off documentary featuring Paddy McGuiness and his family ‘Our Family and Autism.
Prior to the documentary, my knowledge of Paddy was that of a stand-up comedian, actor and television presenter on programmes such as A Question of Sport and Top Gear. I knew little of his personal life and had never seen his serious side.
Paddy and his wife Christine, a former model have three children, eight-year-old twins Leo and Penelope and five-year-old Felicity. All three have been diagnosed with autism.
The programme documents Paddy and Christine’s journey in coming to terms with the diagnosis, they openly confront their feelings which they initially found very difficult.
“We were heartbroken. All we knew was that our children had a lifelong condition with no cure. “
Paddy and Christine share the joys of bringing up three children with autism as well as the challenges, as they talk to other parents, including footballer Paul Scholes, who has a 16-year-old non-verbal autistic son. They also talk to paediatricians and child-development experts, as well as children and young adults on the autism spectrum.
It was a very intimate, honest portrayal of their family life; it was informative and would most definitely have raised awareness and helped reduce the stigma surrounding autism. It was clear from the conversations on social media, that the programme had resonated with many people who took comfort from its life affirming outlook. My own family and friends who have children with autism echoed their praise.
A few days after watching the programme, a friend’s Facebook post about her pride in the most recent success of her son who has autism, popped on to my time line and I got in touch, because her journey is as interesting as that of Paddys’ and just as Paddy’s journey inspired a nation, I felt sure that her family’s story would inspire a community. It is also a tribute to her son who has achieved so much.
Meet Angie, currently an administrator in a nursery in Bristol; Dave a printer working in Yatton; Joe aged 19 in his first year at UCW Weston, studying Musical Theatre; Louisa aged 22 who graduated from Bath Spa during Covid, with a degree in acting. Louisa is now working in Bath, as a mortgage case adviser.
I wondered when Angie had first noticed that Joe was different? She felt that deep down, she knew from a very early age that something was not right, as did her child minder, who felt that his social and communication skills were very different to those of the other children she was looking after at the time. He wasn’t speaking or playing and was tired a lot of the time.
Angie clearly recalls her embarrassment at Joe’s checkup when he was two years old which at the time used to be done in a large group at the medical centre. Everyone sat and watched all the other children playing together, tipping cups of tea, playing with balls and babbling to each other. Joe didn’t leave her side. When a child came over to interact, he would shout at them to shut up – one of his only words at this stage. During the assessment, he threw a cup at a child’s head.
After many visits from the health visitor and appointments with a speech and language therapist, the word autism started to emerge. It was something that Angie and Dave knew nothing about, but from that day onwards Angie set about learning everything she could. It was difficult because there was little on the Internet at the time. Difficult, but at times great fun.
In 2008, wanting to spend more time with her children, Angie started a child minding business. She attended a number of development courses not only to support her new business but to deepen her understanding of Joe’s condition.
On finding out that his children had autism, Paddie became very low and was eventually diagnosed with clinical depression. He described it as a slow process:
“It chipped away at me, with all of the things you have to do, things you have to deal with as a parent of children with autism. It dawned on me that, that’s it, that’s it forever. There’s no ‘they’ll get better as the years go on.”
Christine was upset and angry because she knew little about it and didn’t understand it, once she had a grasp of the condition she felt able to cope.
Angie and Dave’s overwhelming feelings were all related to how they could help Joe succeed in school and in life. It was a real concern, because Joe’s behaviour had become really rough. He had meltdowns for no reason and displayed great anger and violent behaviours. He was becoming more and more isolated. At age three Joe was quite happy to leave the house, at aged five he was very reluctant to do so. If there was to be a trip out, Joe had to be given plenty of notice and it involved very careful, minute planning.
Angie’s comments made me think about Paddy and Christine saying that during the first two years of the twins life, they kept the curtains closed and people rarely came to the house. They seldom went out because the twins’ behaviour was so unpredictable and traumatic.
School was also becoming an issue, with delays in learning and Joe’s social development seriously hampered by his inability to communicate and make friends. When other children were being invited to parties, Joe was not. That’s not to say that Joe was without friends, Angie spoke very fondly of Oli, who invited Joe to go bowling, swimming and play football. She described Oli as always ‘having Joe’s back’ throughout his time at school. Oli’s Mum was equally supportive.
Angie and Dave noticed rapid deterioration when his one to one support in Year 3 was discontinued.
Angie and Dave experienced tremendous frustration because they didn’t know how to help Joe. They feared for his future. His challenging, socially inappropriate behaviour was generally misunderstood, even at times by family members who saw him as just spoilt or rude.
This selection of photos reminded Angie of some of Joe’s behaviours when he was very young. Joe was a huge fan of Harry Potter and this first shot shows a family outing to the Harry Potter Studios. Joe hummed the theme tune as a stim for a whole year.
The word stim is short for self-stimulation and usually involves repetitive movements or sounds. It’s something we all do in some form or another to relieve tension, for example, nail biting, twirling your hair around your finger or drumming your fingers. Stimming is part of the diagnostic criteria for autism and it may be more obvious, for example, it may present as full-body rocking back and forth, twirling, or flapping the hands. It can also go on for long periods. Often, the individual has less social awareness that the behaviour might be disruptive to others.
This picture reminded Angie how sensitive Joe was to touching certain things like sand, water and animals.
The third shows Joe getting some very tight hugs which helped him to calm down during a meltdown.
Support for Angie came from the love and encouragment of a close group of friends who would always respond to a text or a call if Angie had experienced a particularly bad day. Of particular note was Jackie who Angie felt showed great empathy and understanding of both herself and Joe.
Angie also felt that she owed a huge debt of gratitude to her wonderful mother Mary who she describes as a ‘pillar of strength’. Mary used to help look after Joe when he was little and developed a very close bond with him which they still enjoy today.
Three years of speech and language therapy which started when Joe was three, led to little understanding or knowledge of what was stopping Joe from learning. Mention was made of Semantic Pragmatic Disorder, an autistic spectrum disorder (ASD) now more commonly known as Pragmatic Language Impairment (PLI) which describes an impairment in understanding the ‘pragmatic’ areas of language; that is to say, the way in which context contributes to meaning, overcoming ambiguity and understanding inferred meanings.
Meetings with Child and Adolescent Mental Health Services (CAMHs), who provide help for children and young people suffering a range of difficulties were set up. Nothing tangible emerged as a result because CAMHs felt that Joe was coping at school and were impressed that he was a member of his local football club. Angie and Dave’s disappointment was crushing.
After five frustrating years, Angie felt at an all-time low and whilst at a GP appointment, broke down in tears. Her GP could not have been more understanding and immediately put the wheels in motion for Joe to have an autism assessment. One year later, after what seemed like hundreds of reports Angie sat in a meeting where she was told that Joe’s diagnosis was that of Atypical Autism.
Paddy commented on the length of time it took to get a diagnosis, saying:
“There’s nothing in place quickly for parents to support them. It just depends on where you live in the country and that definitely needs to change.”
The National Autistic Society says:
“If your child is autistic, getting a diagnosis can be very positive. Your child is the same person they’ve always been. But now that you know they are autistic, you can get a better understanding of their needs and the strategies and support than can help them to maximise their potential.”
It was a watershed moment for Angie and Dave.
Atypical autism is a condition that can be mild or severe and the symptoms in every individual will be different. A child is diagnosed with atypical autism when they share the majority of characteristics for autism but do not feature all three difficulties, or because they are too young to be diagnosed with autistic spectrum disorder (ASD) I
It had taken seven years to get to this stage, it was then another five years before Joe got a statement and then there was the fight for the EHCP (Education, Health and Care Plan). The EHCP is a legal document that describes a child or young person’s special educational, health and social care needs, it explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life.
Another watershed moment.
The move to secondary school was naturally a source of anxiety for Angie and Dave but armed with the Statement, a series of very helpful transition meetings and visits organised by Clevedon School over a six month period, Joe started his secondary education.
Worrying about his own children making the transition, Paddy visits a secondary comprehensive school, not dissimilar to Clevedon School, where Jack and Maggie two students with autism, are happily integrated into school life. Joe too, successfully immersed himself into his academic work and some of the many extra – curricular activities that were on offer.
That’s not to say that there weren’t problems for Joe, there were times when his peers might be doing or saying things that would upset him and he didn’t understand and he would get very angry and frustrated, which they in turn didn’t understand. He clearly remembers a lot of name calling from one particular group of boys. Having said that, Angie felt he coped well and on the occasions where things did go awry, he had lots of support from his Head of House Mr Gregory who Angie remembers as being very caring and very enthusiastic about Joe’s many achievements. Interacting with his peers is still a challenge for Joe at times.
In Years 7 and 8, Joe had in class teaching assistant support for 80% of his time at the school, notably in Maths, English, Science and Humanities. He had the option of going to the Student Support area for his lunch which he took up during his first years at the school; this was also a ‘safe space’ where Joe could go if for whatever reason, he wasn’t coping in lessons.
Joe’s in class support was reduced to 50% from Year 9 onwards and he used Student Support less and less. Although Joe and his family recognised the huge value of Student Support and he had made full use of it, he didn’t like going there as he didn’t want to stand out from his peers. He did and still does want to be seen as the same as everyone else ! He conforms and masks so he can join in with his peers.
For those who may not be aware of this term, autism masking is basically a social survival strategy where someone with autism will learn and practise certain behaviours and suppress others in order to be more like the people around them.
Some people manage to do this so successfully, and so long-term, that their autism is completely disguised and, more often than not undiagnosed, which can of course lead to serious mental health conditions.
In the course of making Our family and Autism, Christine McGuiness discovers that she is autistic, following a very high score on an AQ questionnaire (a screening test for autism) and meetings with Simon Baron Cohen Director of the Autism Research Centre in Cambridge. In an interview with Baron-Cohen she describes herself as having ‘faked a lifetime’.
When The Children and Families Act 2014 came into play, Joe was one of the first in North Somerset to transfer to an EHCP and Angie couldn’t have been happier with the outcomes which set Joe up for KS4, his public examinations and his future dreams of going to university and studying Musical Theatre.
In terms of these public exams, Joe was given half hour extra time because it takes him longer to process information. In some exams he was allowed a reader for the questions and these exams were taken in the Student Support area. The exception in terms of support was Maths which was a pity because if a question was particularly wordy this was immediately a barrier for Joe.
As Joe struggled with his hand writing he was able to use a laptop in some exams. He had to provide his own laptop at school although there was always one available in Student Support.
Whilst at school, Drama and Music were two subjects that Joe loved and he availed himself of the numerous opportunities to take part in the many whole school shows and concerts that were a regular part of school life pre-Covid. Of note were Once Upon a Mattress, Calamity Jane and Little Shop of Horrors where he had his first speaking part. Angie had high praise for Mr Williams the Director who Joe got on particularly well with and Mrs Murray, the then Head of Music. Angie’s praise for all staff involved in the shows was fulsome.
Joe was also one of the lucky students who was selected as an extra in the Broadchurch series filmed back in 2013 when Clevedon School was used as the setting for several scenes at the fictional South Wessex Secondary School. It gave students great insight into the world of television production, both the challenges and the joys!
Membership of CLOC Juniors – a wonderful group of young amateur singers, actors and dancers based in Clevedon who perform musicals and concerts throughout the year, also featured largely in Joe’s teenage years. He had main roles in High School Musical and Our House and had just auditioned for Rock of Ages when Covid struck. I had the pleasure of interviewing the CLOC team during Covid, and could quite see why Joe felt so at home in the group, you can read about it here:
I’m sure the lovely Pass family won’t mind me drawing attention to the fact that CLOC are currently looking for a new home for both storage and a space for construction.
Their current home where they have produced their award winning sets has been on a local farm and they are looking for a similar unused building that would be suitable to rent.
Without a base to store the set and costumes, as well as building the staging, the club is at risk of disbanding in the future so it’s a situation that needs addressing as a matter of urgency.
The post that drew my attention to Joe’s story was a photo of him at the Autism’s Got Talent show which was established by the charity Anna Kennedy Online and held at London’s Mermaid Theatre on 16th October this year. It’s a live show celebrating the diverse talents of children and adults with autism. For more details of the charity, check them out here: It was the first time Joe had entered and he did so with both great composure and self-assurance.
You can check out Joe’s performance below. He appears at 1m16 and finishes at 1m45. During the interval he felt quite overwhelmed by the industry professionals who approached him, congratulating him on his voice and his confidence on stage. It was his first time doing a solo on stage and it couldn’t have gone better. He was elated as were the rest of the family.
Although Joe passed his GCSEs he didn’t have what he needed to get into Clevedon School Sixth Form and left to go to Weston College where he studied Level 2 Performing Arts in Year 12 and Level 3 in Year 13, passing with a Distinction. He is now at UCW on the Musical Theatre degree course which has performance at its heart, so Joe of course is in his element. Angie and Dave are super proud of the fact that Joe displayed such a high level of confidence and independence that enabled him to make those transitions. It was everything they hoped for.
I asked Joe to try and explain what it was about the music and drama that so inspired him, and when he had first realised that it was something that he would love to do.
Joe clearly remembers the feeling of excitement and realisation that this was something for him after watching Seussical at school. He found it inspiring and uplifting, knew it was something he wanted to be a part of and signed up immediately for the following year’s show.
Joe explained that being immersed in the music and the story is almost indescribable and likened it to a form of escapism – entry into another world where for a short period of time the outside world ceases to exist.
Joe’s dream would be to perform in a musical or a play, on a big stage, with a great cast, to an appreciative audience. How wonderful would that be? And how achievable? It’s a hugely difficult world to break into but given Joe’s grit and determination, his wonderful support from family and friends, then I would say if anyone can do it then Joe can.
In telling Joe’s story, I haven’t really touched upon the impact of his autism on his sister Louisa. I think first and foremost it’s important to say that Joe and Louisa are very close, in fact Louisa feels as though the bond they share is probably stronger than that of most siblings. Joe will still come and talk to her about matters that he can’t talk about to Angie and Dave.
Louisa did however say that it hadn’t been easy for her growing up, she felt as though she didn’t get the attention from her mother that she needed, something Angie agreed with. It was clear talking to Louisa that she saw herself as a ‘young carer’ with significant responsibility for Joe which she felt forced her to grow up far too quickly. She felt there wasn’t room for her to talk about her struggles which led to mental heath issues and a diagnosis of ‘chronic anxiety’ at university where she did finally get the support she needed.
Louisa spoke with regret rather than any feelings of animosity or resentment. Regret that she did not join a Young Carers group, regret that she did not see a counsellor, regret that she did not speak out about how she was feeling. Her thoughts reflected great maturity and empathy.
Although Angie may not have been able to give Louisa all the attention she needed because of Joe’s needs, Louisa had a jam packed itinerary during her teenage years which couldn’t have happened without a high level of support from both Angie and Dave who were keen to ensure that she should not miss out on following her passions. She had private singing lessons and like Joe was a member of the very inclusive Clevedon United Football Club which you can read about here:
Louisa was also a member of the Euphoria Show Choir in Portishead; she took part in Nailsea Musicals, an amateur musical comedy club based in Nailsea; as well as Fame at the Bristol Hippodrome and Grease at the Playhouse Weston-super-mare.
As you can well imagine, lessons, rehearsals and shows equated to much ferrying around and chaperoning but Angie and Dave were very keen that Louisa too should follow her dreams.
Angie also felt that watching Louisa perform also gave Joe confidence
I asked Louisa her view of Joe today and needless to say she shares the pride of her parents. She described him as a child who was non-verbal until the age of seven, highly dependent on those around him, displaying extremely socially challenging behaviour, who is now making his own way in life and following his dreams.
A paediatrician told Paddy that the children may have difficulty recognising emotions which was a thought that stayed with him despite Christine’s reassurances.
“What gets to me with them all is – and again, this is only how I think – I think, “Will they ever know how loved they are? Do they understand what love is?”
“When I’m with Leo every night in bed I will say to him, ‘Who loves you more than anything in the world?’. He’ll say, ‘you do’. Then I’ll go, ‘Do you love Daddy?’ and he’ll go, ‘yeah’.
“But I think to myself, ‘Is he just saying that, or does he know that?’”
I asked Angie her view of this and she felt that Joe did still struggle with recognising emotions, she remembers clearly the first time he said I love you which was a lot later than his peers at aged eight. A memorable occasion.
At the start of this blogpost, I described Our Family and Autism as Paddy’s “very intimate, honest portrayal of their family life”, the same can be said of Angie’s account:
“At times, it felt like grief for the child we never had. But then each teeny step felt like a massive leap and we’d remember how lucky we were. My best friend says God only gives you what you can cope with. We wouldn’t change a thing however and every day is an adventure.”
Paddy’s intention in Our Family and Autism was to share the highs and lows of life of a family where there are children with autism and to help people understand autism a little better. I hope I’ve added to that understanding in this blog about a family in the heart of our community.
It was such a pleasure talking to the Pass family and learning about their journey. Joe and Louisa continue to bring great joy to the lives of Angie and Dave, and I’m sure in a couple of years’ time, we’ll be enjoying photos of Joe graduating as much as we have of these of Louisa who graduated yesterday. All the best.
Believing in an inclusive society, I feel that it’s really important that we have an understanding of autism. If you would like more detail, the National Autistic Society have produced a very accessible video which you can view here:
Their website is also very useful.
I stress important because the most recent statistics show that:
” over the course of several years, diagnoses of autism have been on the increase in the UK – with a recent report revealing a sharp increase in the prevalence rates of autism in UK schools between 2010 and 2019. Autism currently affects 1–2% of the UK population – that is 1 per 100 children and 2 per 100 adults.. Therefore, based on the number of referrals in the system, there are around 100,000 children and 1,000,000 adults in the UK with autism.” (Hogrefe Principal Psychologist, Liz Hey (MSc, MBPsS)
If you’d like to watch the Paddy McGuiness documentary, you can view it here: