Posted in Reviews

BBC – The A Word – Season one review

People were shocked when I said I hadn’t heard of this little BBC show. You know cause as parents of an autistic child we automatically should have seen it 🤣

So the first episode throws you straight in to everyday life for the Hughes family, Joe’s behaviours, the ways in which his parents compensate for him and explain away any problematic issues (He just likes music…) and the way others have already started discussing him behind their backs.

When season 3 premiered I received deluge of texts and calls saying it was back on,  I had to watch it, It’s about autism! Although I am really glad otherwise I wouldn’t have known to check it out. It did make my laugh at the time because Big Nan called as her friend called her to tell her to call me 🥴

I think i must be about 10 mins in and the confrontation between Alison and her family who think there is something wrong with Joe is so familiar that it has me sobbing 😭 The blinds are open so anyone passing may think I’m having a breakdown. Its not in any way easy to admit your child is different and its most definitely not easy to listen to someone else say it.

The cast is brilliant especially the 3 main family members; Mum, Alison. Dad, Paul and Joe. I’m slightly concerned that Christopher Eccleston is the Grandad and not the leading man… when the Hell did that happen? How old am I?🤔

Alison is doing exactly what I did, she is researching and dealing with Joe’s issues in secret like there is something to be ashamed of. Almost as if its dirty. Not the fact there is something wrong but the fact you believe it.

During Joe’s assessment with Dr. Waites Paul keeps jumping in and she threatens to make him wait outside. Dave was always so quick to jump in a explain away William’s issues and sugarcoat things. To be honest I think we both were but it took Dave longer to be honest about it.

The whole thing about birthday parties and invites is something that I worry about massively as William gets older. Will William want to be invited to parties or will it be us wanting him to be invited? It seems like the lack of invite for Joe is affecting Paul and Alison but Joe himself is oblivious.

Someone shared something on Facebook the other day about how hard it is to have people stare and judge when your little one is having a meltdown.
It really does hurt when people do this. I totally understand that some people may not grasp what our child is doing and why but that doesn’t give them the right to pass judgement. It is hard to keep your chin up when your little one is trying to take other peoples food in a restaurant but then throws their own food behind their back or decides to lay on the floor or crawl instead of walking. We have actively avoided certain places. It sound ridiculous but planning to take William anywhere takes more preparation than a bloody wedding. 👰

It’s not going to go away if we call it something different.

Dr Waites. The A Word

Episode 2 jumps straight in showing Joe isolated at school, he seems perfectly happy but it hits Alison hard. William is really happy alone and we have had to learn how to play with him rather than teaching him how to play with us. However more times than not he chooses to be alone and will walk away from us to do his own thing. It took us a long time to get used to this as following him will upset him.

They push Joe into doing things he doesn’t want to do. To play in different ways, to play in a way in which is deemed ‘normal’ but this isn’t Joe’s normal and its uncomfortable to see.

Alison worries about him becoming labelled in school and how it will effect him. Paul argues that he already has a label with his autism diagnosis but she is having none of it. I guess this brings us back to one of our older posts about the benefits and pitfalls of having a diagnosis. Check it out here…

Its interesting to see how Joe’s diagnosis effects the rest of his family and to watch the conversations had behind closed doors, especially from Maurice as he doesn’t hold anything back and says it as it is. It does make me wonder what our families have said about William before we were so open about it. Did they say things like ‘he isn’t normal’? Did they grieve for the grandchild, nephew or cousin that they thought they would get? It is eye opening as in the beginning you are very much in a bubble, its just you and your child fighting for diagnosis and help but you forget the rest of family are still there with the same worries and feeling you have.

I really feel for Rebecca as the older child. She seems to be going through a pivotal part of her adolescence and no one seems to be noticing or caring. She is just left to her own devices and frankly a little neglected. She obviously cares for her brother a lot which is brilliant and they have an amazing bond, she just ‘gets him’ but it also beautifully highlights both the disadvantages and advantages of having other children. Check out our post about it here…

Watching Joe have a meltdown because he can’t get what he wants is an all too familiar situation. Joe is very vocal about wanting his music and shouts and breaks things. Whereas William will lash out at me or himself to vent his frustration. Before we could admit anything was wrong I used to think it was a way of him manipulating us into getting what he wants, although we now understand that it’s more like what William needs rather than wants. Needs to feel safe and comfortable. Whether it is a biscuit or BabyTV or even for us to press Duggee’s musical arm 5 million times in a row 🤯

Shame (insert naked Cersei Lannister here)… its something we all feel no matter how old our child is when autism is first addressed or even whispered about. Paul hit the nail on the head when he is telling Alison she is ashamed of him for having it, ashamed of them for not picking it up sooner and ashamed for feeling ashamed in the first place.


Episode 3 starts with the first meeting with a speech and language therapist… It feels a little unrealistic as it happened so quickly. There are no wait lists in the lake district? She came from Manchester so there must be no wait lists there either… Think we need to relocate 🤔

Maggie, their SALT is nothing like ours. Its was a frightening experience but that was all in our heads. I’m not a massive fan of people I don’t know coming into our house. I tend to get really anxious and end up snapping at Dave every time. our SALT was lovely, her name is Sally and she really put me at ease and William enjoyed interacting with her.
Maggie is very straight talking and blunt and although it makes me like her from a viewing point of view, I can not imagine she would have gone down so well had she been the one to turn up at our house. I suppose all professionals have their own approach and use it to determine how to help their patients.

Alison is desperately trying to communicate with Joe and even tries to engage him in play. She is desperately trying to bribe him to do things with her, it feels like she wants to show Maggie that this isn’t her fault. In a look at me sort of way.
I feel her pain. I would love William to sit with me and read books without eating them or play with cars on the floor in the conventional way but that’s not how he plays. He takes comfort in lining his toys up and moving them from place to place which is a solitary activity and if I get involved he gets upset.

Another thing I find super unrealistic is the fact Maggie spends so much time at their house on first visit and the fact she is coming back the following day. Is she privately paid? If that is the case why didn’t Alison recognise Maggie’s name? We waited Months and months for a SALT visit and months after that we have still only had the one which lasted about an hour.

More prime examples of Rebecca being brushed aside and forgotten.  She is trying to get her parents to show an interest in her school play and they immediately turn it into another conversation about her brother. Every time she tries to talk they ignore her.

It is something we are very aware that we already do, our world revolves around William, making sure William is getting the adequate support is our main focus and it is one of biggest talking points. Why shouldn’t we tell people what’s going on, his achievements or even how hard it is? But this shouldn’t been done at the detriment of other siblings. This is why having another child worries us so much. The unfairness of it all. How could we go from giving William 100% of our time and energy to splitting it? could it be split equally? Should it be split equally?

Alison missed Rebecca’s play, she missed it and it was so important to her. All because she wanted to bully Maggie into seeing Joe. To top things off they end up arguing about Joe and don’t even realise that Rebecca has gone 😢 I can almost smell the teen pregnancy story line in the works.

I must say the soundtrack is absolutely belting 🎧


Episode 4 starts by showing how much strain Paul is under and how Alison is pushing all her energy into Joe and getting him help. She has actively volunteered for the school in order to gain more insight into Joe’s behaviour with other kids and it’s difficult to watch. It made me feel uncomfortable, she is there to supposedly help the other children read but is focusing on spying on her own child the entire time. However I don’t think I should be surprised she is neglecting other peoples kids when she ignores her own daughter all the time.

The Fever Effect, A fever usually makes you less alert, tired, and ratty however in some children with autism, a fever makes them ‘better’, more social, alert, even talkative. It has been described as providing a glimpse into what your child might be like without autism.The hope in Alison’s voice as she tell Paul that Joe is ‘turning a corner’ after he has been poorly is absolutely heartbreaking. You can see it in Paul’s face as they embrace that he knows it’s not true. And then the next day Alison describes him as being ‘back to abnormal’ 😢

She said she felt like she could see the real Joe underneath all his autism. 🤔 Joe is Joe. Having autism is part of who Joe is, it’s a pivotal part of Joe’s make up the same way it is William’s. Those moments in which he looks at me and I mean really looks are so special and I wouldn’t trade those for the world. even the times he can stare into space and be in his own world and then just giggle at whatever is in his head…. granted late at night this creeps me out and I often refer to him as a psychopath 🤪

Oh god Rebecca hit the nail on the head suggesting Alison’s manifesto for school governor. ‘All children matter but not as much as Joe’ ouch! Shots fired! 🔫🔫🔫


Episode 5 shows how the loss of a person can massively effect not only someone with autism but their family too. It beautifully displays the slow build up of Joe’s emotions and how he struggles to release them. He loves Maya in his own way and the fact that she has been taken away from him takes it’s time to sink in fully and its heartbreaking to see. He begins by withdrawing slightly and then slowly goes into full blown meltdown. Its beautifully handled by actor Max Vento.

William’s main worker at nursery was originally a woman called Linda, he loved Linda so much and couldn’t wait to be with her. He didn’t bother with other children but could happily spend all his time with her. Linda was lovely and motherly not only to William but to us too, she just had a way about her that immediately put you at ease. I knew our little boy was safe with her.
BUT William couldn’t stay with Linda as he needed someone who was trained in children with SEN to help him develop.
In came Val… she specialised in SEN. She was going to be William’s key worker meaning he couldn’t spend his time with Linda. It was OK at first but then William started actively trying to find Linda at nursery, giving Val the slip. When this didn’t work he stopped wanting to go to nursery at all. 😢 Do you know how we fixed it? We didn’t. It was hard and difficult but he needed Val. He needed her to support him properly in his education but he needed Linda for comfort and we had to chose which was most important and that had to be his education.

Paul’s and Alison’s discussion about having another child perfectly represent in equal measures our own thoughts on the subject. They argue about it as two sides of the fence but with us we just sit in the middle both agreeing with the reason for and against but commit either way. One day it’s a 100% not a chance in Hell and the next we are a little broody. 🤷‍♀️


Episode 6, the series finale. It kicks off at the launch of their family pub and Joe is struggling. It’s hard for him to be around so many people in a new environment. It’s bloody hard for me to be around so many people in a new environment and I don’t have autism. Alison is desperate for Joe to stay as he is part of their family but Paul is quite happy for him to be left out and removed from the situation which feels as if it’s done to save embarrassment.

Joe goes missing whilst with his grandad. Paul and Alison are speaking to a search party and they’ve just admitted to everyone that Joe is autistic for the first time. Alison describing the fact he may not know he is lost or in even in danger has really struck a chord. One of my biggest worries about William’s future is because he has no perception of danger. I’m sure I have said it before but he would walk off a cliff if it was to get to biscuit.

The suspicion that falls to Ralph is awful. Alison immediate pegs it for what it is and that it’s because he has Down syndrome. Just this small conversation shows how much Alison is growing in her acceptance of disabilities but then she goes round to their house and confronts Louise and Ralph anyway 😕. She shows these signs of growth but then disappoints as usual. The theme of prejudice runs strong in this series finale especially how bad it can be within such a small community.

Overall season one was brilliant. I’m not going to lie, it wasn’t an easy watch and some parts have been like re-watching conversations and feelings Dave and I have had over the past two years. The stress placed upon Alison and Paul’s relationship. The lack of communication. Its things we have all gone through as we come to terms with as Paul puts it; our grief over the children we could have had.

Its is definitely a series I would recommend to anyone who has an autistic child within their lives as it gives an accurate insight into not only what the child goes through but their families too.

I look forward to starting season two and hope it is as good as the first 😊

Posted in Guest Posts

Guest Post by Nicola Reekie

Nicola reached out to us on our Facebook page to share her story, she is currently organising the first free online pathological demand avoidance summit which will take place between 3rd – 6th July 2020.
Pathological demand avoidance (PDA) is part of the autism spectrum and is used to describe those whose main characteristic is to avoid everyday demands and expectations to an extreme extent. It can also be referred to as Extreme Demand Avoidance.

according to NAS (National Autistic Society) the distinctive features of DPA profile include:

  • resists and avoids the ordinary demands of life
  • uses social strategies as part of avoidance, for example, distracting, giving excuses
  • appears sociable, but lacks some understanding
  • experiences excessive mood swings and impulsivity
  • appears comfortable in role play and pretence
  • displays obsessive behaviour that is often focused on other people.

People with this profile can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and in control. It’s important to acknowledge that these people have a hidden disability.

In Nicola’s words…

I’m sharing this as it would have made a huge difference to us as a family if any of the professionals we were in touch with knew about PDA, it would have made a huge difference to us as a family.
I’ve started to see that the more I’m sharing on social media, there’s more people I’ve started to see the more I’m sharing about this on social media there’s more people understanding that their children aren’t naughty just have different needs
.

It was a chance conversation with a friend after we had been through the most challenging time yet. During this chat she mentioned three letters to me that I’d never heard before : PDA

When my son was young getting him to do anything was a struggle. My husband and I were met with constant meltdowns and upsets. Something as simple as dressing him and taking him to nursery on time was impossible.
Everyone told me it was just toddler tantrums and he would soon grow out of it. But he didn’t. In fact, things only got worse.
He became extremely fussy about food. If two different items on his plate touched one another he wouldn’t eat them. He left anything that was the slightest bit burnt and he’d even refuse a chocolate bar if a piece of it was broken.

A simple description of PDA is:
Anxiety need to be in control and avoid other people’s demands,
this can be ordinary daily tasks such as getting dressed, eating and going out even to do their favourite activities.

They will often go to extreme lengths to avoid the demands
For example negotiating,distracting, creating an excuse, or saying something shocking
If all this fails then a meltdown.

When my son was younger he was very set in his ways and would only play with certain toys in a regimented way. On top of all this, he barely slept. Me and my husband were permanently exhausted. We looked like the walking dead.
He became extremely fussy about food. If two different items on his plate touched one another he wouldn’t eat them. He left anything that was the slightest bit burnt and he’d even refuse a chocolate bar if a piece of it was broken.
There are many other examples I could give however I want to keep this short.

As time has gone on and we have an understanding we are able to support and guide him the best we can.

Click the logo to go to the Positive PDA website and find out more, or better yet register for the summit. Educate yourselves about one of the lesser known parts of the spectrum. The summit is entirely free during its duration and has over 16 key-note speakers. I for one have registered and am excited to learn more. Thanks Nicola 😘

And if you haven’t already check out our Facebook page https://www.facebook.com/ourjourneyontothespectrum