Posted in Reviews

Autism on the big screen – part one

After reviewing Jessie Hewitsons book and BBC’s The A Word it got us thinking about how autism is depicted in movies and I couldn’t immediately think of a single movie I had seen in which depicted an autistic character.
So after a quick google search (what did we do before google eh?) I came up with a list of movies we want to work through and review or in some cases pick apart 🤔

So our first choice was on all the lists of movies we found and it was the first to come to my head and Dave kindly agreed we could watch it (not that he has a choice, I don’t think he even knows how to use our smart remote 🤣)

Forrest Gump

Author Winston Groom, star Tom Hanks nor director Robert Zemeckis have ever commented on if Gump was intended to be portrayed as autistic but there are so many traits scattered throughout the movie that it would make it too much of a coincidence however the novel was written in the mid 80’s and autism at that time was not widely recognised or understood so I highly doubt that the character was written with autism in mind but realistically in the mid 80’s did anyone have autism in mind?

Don’t let anybody tell you they’re better than you Forrest… If god had have wanted us all to be the same he would have given us all braces on our legs

Mrs Gump

That journey to school is excruciating to watch, his little face as he walks down the bus. Kids can be awful. This is what terrifies me if we can’t get him into a special school. Kids are not easily accepting of any one different to them especially as they get to high school age.

Young Jenny: Are you stupid or something?
Young Forrest : Mama says, “Stupid is as stupid does.”
Their first meeting is so iconic but what really jumped out for us was that Jenny just accepts Forrest for the way he is. She asks the question and that is it. She wasn’t malicious about it and didn’t push the question.
Will that be what it is like for William? Will we have to warn every parent & child that William is special, that he has autism or that he is different? Or will he be able to handle it on his own?

Oh god the bullies 😭 I would personally climb into that TV screen and knock those little bastards off those bikes!! 🥊
Poor Forrest bleeding from his head but he ran those braces right off! My heart immediately thinks ‘yes, go on Forrest! you outrun the bastards’ but my parent brain is saying ‘his mother should be asking that Orthopaedic doctor for a refund. Those braces didn’t last long enough to straighten his back!’

One of the main stand out traits is that he is lacking of social understanding, he doesn’t understand the etiquette of social situations.
He meets two presidents, he tells one of them he has to pee and when the second one jokes about seeing his bullet wound he thinks its a serious question and reveals his buttocks.

He is a very literal in everything he does as shown with his facial expression and rigid response during this iconic exchange.

Watching Forrest put his rifle together with such sheer determination is like watching William play with his Mega-blocks. The process is almost mechanical, they know how it came apart and they know how it goes together so could happily and easily repeat it numerous times.

That look of love and admiration in Forrest’s eyes whenever he see’s Jenny is magical although if William ever brought home a girl like Jenny then she would be buried under the patio à la Brookside.

Tom Hanks is hands down the only actor I feel could have played Forrest, nor because he is the actor that does play him but because he does it with such an innocence about him that I feel many men of Hanks age would struggle to pull off.

I know we are purely speculating but if Forrest does have autism it make perfect sense as to why he would do so well in the army, not that I would ever let William join but think about it…

  • A strict and immovable routine
  • Constant clear instruction
  • Uniform

Every thing has a structure, your bed is made in a certain way. Your uniform has to be cleaned and worn in a specific way. Its ideal for those who relish a routine.
Its no surprise Forrest made it to sergeant during his enlistment. In one scene he is seen to be wearing several medals.

  • Purple Heart – awarded to those wounded in battle.
  • The army good conduct medal – awarded after 1 year of faithful service during times of war (3 years if no current war)
  • National defence service medal – awarded for service during time of conflict.
  • Vietnam service medal – for service within that specific war.
  • Republic of Vietnam medal – awarded by the Vietnamese to foreign troops.
    FYI – it is engraved with a start date but no end date as they were made before the war was over.
  • Medal of honour – given to those who have performed distinguished acts of valour.

💕Bubba💕
He is such a brilliant friend, he immediately accepts Forrest for who he is, he helps him and genuinely cares for him. He plans to be friends forever. I hope William has a friend like Bubba when he’s older. Hell I wish I had a friend like that now.
After the explosions in Vietnam Forrest tell himself that he needs to go back and save Bubba and despite stopping and saving his entire platoon he keeps going back oblivious to the danger because all he needed to do was get Bubba and he was locked on that mission so everything else didn’t matter. I know its not no where near the same but William has no sense of danger at all would walk through fire to get to his hearts desire… usually food related, highly likely a biscuit🍪

Another thing that stands out throughout the movie is how literal Forrest is and his lack of inner monologue.

Forrest shows many of the common traits of obsessive behaviour but the biggest stand out obsession is ping pong.
He plays when no one will play with him.
He sleeps with his paddle and ball.
He didn’t want to change his paddle despite being offered a lot of money.

Some nights I have to pry my egg poacher out of Williams tiny death grip whilst he’s asleep.

He then becomes obsessive about running, he didn’t think about it and just kept going. Every dead end he reached he turned around and went in the other direction. In the film he was running after Jenny left and it could be that he was running away from the pain of her leaving but it seems that in my opinion he was running to fill the obsession gap that jenny had created. Filling the void so to speak.
3 years
2 months
14 days
& 16 hours
that is beyond obsessive! It’s not neurotypical behaviour.

I had never realised before but as Haley Joel Osment gets on the school bus and Forrest sits down he was keeping the promise he had just made to his son. He told him he would be waiting right there when he got back and that is exactly what he is doing.
He is sitting there until the bus comes back. 😢

Posted in Reviews

BBC – The A word – Season two review

Episode 1 throws you straight into a meltdown. Joe once again has put himself into danger and climbed the school roof.

I’m autistic, I’m autistic, I’m autistic. Nobody wants that.

Joe Hughes. The A Word.

After telling the whole village about Joe being autistic I would have thought his parents would have spoken to him about it. I understand he was 5 when he went missing but to not even address it is a little peculiar. It’s really sad that he had to hear he was autistic from someone else.

Telling William that he is autistic has never been a question for us. When he is old enough to understand we will explain it to him. Our main issue is how we tell him, how we will explain it to him. It’s not as if we can answer the why’s he may have. ‘Why me?’ I don’t know son. We asked ourselves the same question for years. It’s a hard thing to plan because we don’t know at what age he will be ready for this kind of conversation.

When things like this happen, it’s always Joe it happens to.

Sarah Hibbs. The A Word

The speech with the other parents at the school was interesting. It’s a lack of understanding. It’s like the other parents expected them to be able to just come up with a way he can stop these behaviours but it’s not that simple. The reasons behind not sending him to special school were very similar to the ones we had before we decided where to send William. It’s a hard decision to make. Do you want them to have a ‘normal’ school life? But then who is it normal for?  Or do you send them to somewhere who can speak and educate them on their own level?

I’m not the same.

Joe Hughes. The A Word.

Episode 2 starts with the change to Joe’s morning routine. Not only is the school itself different but due to how far away it is there isn’t time for his morning routine meaning Joe is struggling even more with the change. I really love the look book they created for him. Pictures of his old school, teacher and friends and the pictures of what the new school is like. I’ve seen parents in my support group who’ve made very similar things to address changes or events. To go step by step through what will happen on a holiday, in an airport etc. They’re brilliant and if it’s something we will need in the future I look forward to naming them for William. I love a bit of crafting ☺

He’s our family’s north star, we follow him. It’s how it has to be.

Alison Hughes. The A Word.

Paul’s face when Mark is having his meltdown is so full of fear and I understand that. Is this kind of meltdown what he has to look forward to? Autism isn’t something children can grow out of and it looks as if Paul has just realised that and it is hard. That realisation that this is with you for life and it’s hard. That moment if first dawns on you. It hits you like a brick to the first but hurts twice a much. 🤕


Episode 3 had more Ralph ❤ I love Ralph so much and his relationship with Maurice is so innocent and really good to watch. I’m so glad he hired him at the brewery.

Well to be honest I did feel a bit of a stirring in the glove compartment 🤣

Maurice Hughes. The A Word

Episode 4, the night away without the kids. Without Joe. I’m not saying that he shouldn’t be the centre of their universe but they have massively lost touch with themselves as a couple. I worry about Dave and I, before I was on furlough we rarely saw each other and just touch base every now and again but it was always William centred. I think we need to make a conscious effort to spend time as ourself when lockdown is over. Dinner and a movie as Marie and Dave instead of as William’s parents.


Episode 5 starts with a video of Joe. A video his auntie has compiled of his behaviours. She wants to use the video to help parents who have ‘Joe type’ autism. She clearly explains that when people think of autism they either think of a non verbal child in meltdown or a rain man type. Autism is such a big spectrum it’s difficult not to picture one type of person. I suppose autism has a stereotype just like anything else. I will forever picture William when I think about autism but that’s not what I pictured before. I suppose its difficult to be educated in something so vast. I can honestly say that until it became part of our lives I hadn’t bothered to learn anything about it.

The arguments between Paul and Alison are so hard to watch. Paul seemed so accepting in season one but as time has gone on he seems to regress and swap places with where Alison was in the beginning.

I love Joe but I hate his autism!

Paul Hughes. The A Word.

I’m really struggling to sympathise with Paul. It feels like his character has done a complete 180° he was accepting and understanding and now he is just a bit of a pathetic dick. Especially with his views on the video. I can’t understand why he doesn’t want it used if the footage of their son can help local GPs diagnose autism sooner by giving them a better understanding.

It’s a different way of being human

Alison Hughes. The A Word.

Mark ❤ he reads his hope’s and aspirations that I believe are for his EHCP. His just wants things everyone else takes for granted, the be happy, to have an education and to be accepted by friends. Its heartbreaking and inspirational at the same time.

Every bit of progress that has ever been made to peoples attitude towards autism has been made because people talked about it, were open about it, explained it.

Nicola Daniels. The A Word.

Episode 6, season finale. Paul just wants to run away, he wants to pretend nothing is happening. He wants to end his relationship because he can’t cope with how well Alison is coping. Its upsetting because they should be pulling together but statistically parents raising a child with autism are 10% more likely to get divorced  compared to those with neuro typical children. This is much more prevalent for those who’s children are 8 or over. So 5 years left of married bliss before I have to give Dave the old heave-ho 🤣 but on a serious note it is difficult to pull together when you each have your own ways of dealing with a diagnosis. We do worry about it, me more than Dave as I’m often a neurotic mess but the thoughts are always there. Will we make it through this? Can we make it through because there isn’t an end really? There is just the journey.


Overall season 2 was brilliant but in a completely different way to its predecessor. It seemed to focus more on the fractured relationships of the family rather than on Joe. It was a greta watch but again not in the same way the first was.

I would still highly recomend it and personally look forward to season 3. 💙

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 Reference

Who’s who

Imagine a young boy at school being ridiculed by his peers because he doesn’t understand the thing they are being taught, they taunt him and call him Dumbo.
Imagine this child is real and he has autism.

Now imagine that child has grown up…
What kind of man do you see?

Now imagine a young girl who doesn’t sleep due to insomnia, professionals have urged her parents to have her institutionalised.
This girl also has autism.

Now imagine her grown up, now you know who the boy was is your guess more accurate? Who do you see?

If you’ve met one person with autism, you’ve met one person with autism.

Dr. Stephen Shore


Autism is not one disorder, but a spectrum of disorders. All of which share symptoms but no individual on the spectrum has the same traits as another. I used to think autism was one thing but there arte so many things in the autism spectrum which I am guessing is the point. You are classed as autistic if you have any of these disorders. PDA (Click here to read more about this), Childhood Disintegrative Disorder, Pervasive Development Disorder, Asperger’s and then just Autism itself… People who had Rett Syndrome used to be classed as Autistic but as that was discovered to be caused by a mutation it has not been declassified from the spectrum.

Lets take Susan Boyle for example. Her debut album (despite the poorly chosen hashtag #Susanalbumparty) became the best selling album of all time. She is also the third person ever to reach n°1 in the UK & US charts twice in the same year.
She has sold over 19 million albums; that makes her album platinum! She has a net worth of over 20 million. These are amazing achievements for someone who found fame on a talent show especially since she didn’t come in first place.
Susan is an amazingly talented lady who happens to have autism.

Have you heard of Satoshi Tajiri? I will forgive you if not because you are probably not a massive nerd like me.
Well Mr Tajiri created Pokemon. As a child he loved collecting bugs but as his town became more urban it proved difficult. His idea behind Pokemon was so children could experience the excitement he had when catching and collecting creatures. Pokemon has been on the go now for almost 25 years and continues to spawn games, cards and movies. Satoshi has a net worth of over 10 million and is often referred to as a genius.
Personally I feel his greatest achievement is Pokemon Go which has helped many children and adults both on and off the spectrum become more sociable and explore the world around them.
Satoshi himself also happens to have Autism.

Some of the most iconic movies of all time have been directed, produced, animated or written by this guy. This is Tim Burton.
He brings us wonderful stories about outcasts, about wanting more, overcoming obstacles and beating the bullies.
Tim worked for the institution that is Disney and was fired because his ideas were dark and in his own words his ‘animations looked like road kill’
In his vast career he has received an Emmy, a Golden globe and many other awards. He has a net worth of over 130 million but his greatest achievement is his family.
Burton also has autism.

I’m guessing you have noticed a theme here…
As frightening as your child having Autism may be it does not necessarily mean they will not be successful as adults. There are hundreds and thousands of people of there with ASD, in fact over 700,000 people in the UK have been diagnosed that’s 1 in every 100 people. Think of everyone you know or have met… it is more than likely you have met someone with Autism. Maybe that person is William? but if it’s not, This is William.

His greatest achievement to us so far is eating bread, independently walking almost 1 mile and climbing the stairs as if someone is chasing him. 🙈
We don’t know what his future holds and how far he will develop but the possibilities are endless. Sometimes its hard for us as his parents to think positively but we must remember to celebrate his achievements no matter how small they seem in comparison to other children his age.
William is extraordinary and continues to surprise us every day.

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

Posted in Autism In The News

Back to the pound… part 2🐶

MYKA STAUFFER! The more I read about this woman the angrier I get. How could she give up a child like he was a stray dog?!

If you haven’t read our original post on Myka Stauffer here it is

Back to the pound 🐶

I have always judged people who get a puppy or dog and decide to take it back to the pound. I am completely aware there are 100% valid reasons in some cases but it always devastates me. You promised that little furry guy a new home, a good life and to love them forever… So […]

She implied to the word that she had ‘re-homed’ Huxley to a new mommy but turns out that apparently Huxley is in the US foster care system! And let’s face it even here in the UK we haven’t heard great things about that system. This means his current situation and new mommy may not even be permanent. Another traumatic upheaval for a little boy who deserves so much more. There is even rumour spreading round the internet that the re-homing was less official especially since the state of Ohio have announced his in not in their custody.
When a parent (and I use this term loosely) decides they can no longer look after their adoptive child they go through an official vetted process called adoption dissolution. As it was Myka who used the term re-homed it may be that the process was not done officially and that they used the wildly criticised and unsafe underground method which is called… you guessed it… Re-Homing!!!

I have re-watched the video announcement, because you know, I felt my blood pressure wasn’t high enough and I just wanted to torture myself. She states in the video that the doctors told her he needed more, implying that they told her he needed re-homing.

She then discusses this “secret” about Huxley and how they can’t discuss in detail for his privacy and in fear of messing up his future? Well I’m sorry but they’ve shared every aspect of that child’s life including the fact he has bitten and pinched his siblings. By saying this repeatedly in the video it is implying that it is Huxley’s fault that she gave up on him. Including a video of him having a meltdown.

In a comment on one of her videos she also states Huxley wanted to be re-homed and constantly chose his new family instead of the Stauffer’s. He also apparently signed and showed lots of emotion to show he wanted to be with them. Let’s also bare in mind that Huxley is non verbal and only has limited use of signs.
There is no way in fucking hell he would be able to knowingly agree to or want this let alone tell them he wants this.

Obviously this was everyone’s fault but theirs! It feels a little bit like the blame game. There full video about re-homing Huxley wasn’t even about Huxley but instead all about Myka just like all her other posts about their kids.

This post has resurfaced and people are slating her for it and I despise myself for this but at the time of writing this she was asking for guidance and it’s not fair for people to use that against her.
William, as you guys will be aware is really food orientated to a degree in which it is obsessive. He loves food and doesn’t understand the difference between his food and anyone else’s. I noticed in one of Myka’s videos that she was using treats to help Huxley learn signs; this is a method our key worked advised us to use to help William make eye contact. Unfortunately as soon as William sees the food he goes into meltdown even if he doesn’t want to eat it.

There are numerous other theories out there as to why Huxley was re-homed however based on some footage which has surface I’m beginning to think he should have been removed from their care before they gave him up. There is footage of Huxley showing his hands taped so he is unable to suck his thumb. I wonder if they did this to their biological children.

Babies have natural rooting and sucking reflexes, which can cause them to put their thumbs or fingers into their mouths — sometimes even before birth. Because thumb sucking makes babies feel secure, some babies might eventually develop a habit of thumb sucking when they’re in need of soothing or going to sleep. This can be used as coping mechanism.

Thumb sucking for autistic children can be stimming behaviour, stimming is short for self-stimulating behaviours. It is also known as “stereotypical repetitive” behaviours.
Therapists class stimming as a protective response to being overly sensitive to environmental stress. For example, a child starts to flap his hands when he is in a noisy shopping centre.  Stimming is less reported when a child is engaged in activities that they like. In this case, stimming is recognised as an activity to occupy them while they are bored. Stimming is also viewed as a form of cause and effect play.
One of William’s stimming behaviours includes sucking on clothes tags, we purchased something amazing for William so that his hands could be free for him to explore the world around him. Its called a Chew Buddy. Link below for you guys to check them out.

https://www.amazon.co.uk/Chewbuddy-CBA81RAB-Pack-of-2/dp/B00KLDO5PW/ref=sr_1_1?dchild=1&keywords=chew+buddy&qid=1591114956&sr=8-1

TheKillerDoll on YouTube discusses how it is blatantly obvious how they used Huxley to boost their channels and how they treat him differently to their biological children. Check out her video here. https://www.youtube.com/watch?v=IVcdwG17Rhc

The Stauffer family don’t seem to be leaving the headlines any time soon, especially as more and more skeletons are falling out of their closest, the YouTube community are turning against them, their sponsors have cut ties with them, their subscribers are dwindling and now at 706k, she has been caught out buying Instagram followers, I’m a YouTube novice so I wonder if she has bought viewers too?

Posted in autism and covid19, Autism In The News

EHCP Announcement part 2

Remember when I last posted about the ‘temporary’ suspension to EHCP’s?
Remember how I worried that it wouldn’t temporary?

I hate to say I told you so but the suspension has now been extended further until 30th June… This could be extended even further closer to the time.


In case you are unaware an EHCP is an Education, Health & Care Plan which is a legally binding document that is written by the Local Authority (with parental and other professionals help) regarding a child’s additional educational and care needs. The plan outlines the type of support or intervention that the child will receive to ensure that their needs are being met.

Due to the coronavirus pandemic I did understand why this had been placed on hold due to the changes which schools were facing in regards to social distancing and how many staff and pupils in a room etc however June 1st is the day they have been pushing for kids to go back to school but with the latest announcement it seems they didn’t mean all kids, they didn’t mean the kids that need additional support.

“Make no mistake, I want the UK to be the best place in the world to educate your child and make the most of people’s talents.

Gavin Williamson, Education Secretary

This was taken from a speech Mr Williamson gave about his plans for post-Brexit education. He focus on improving technical education and welcoming international students, what Gavin missed out in his little speech was education for the already under funded and overlooked SEN children.

The new announcement is disappointing but not surprising.

Instead of Mr Williams sharing any of this to his twitter account instead he shared this…

‘Hello NSPCC? I would like to report countrywide neglect of those with special educational needs.’

I suppose we will have to wait until the end of June to see if this suspension of pivotal EHCPs is lifted, I for one will not be holding my breath.

Posted in Emotions

I F***ing hate you

Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!

Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?

A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.

Its these moments in which I feel like a huge failure as a mother.

I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.

It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?

The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.

I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.

Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?

Posted in Autism In The News

Back to the pound 🐶

I have always judged people who get a puppy or dog and decide to take it back to the pound. I am completely aware there are 100% valid reasons in some cases but it always devastates me. You promised that little furry guy a new home, a good life and to love them forever…

So you can completely understand how I felt when I read a news article about a woman called Myka Stauffer. Well it turns out Myka is relatively famous but I had never heard of her. She is a YouTube influencer with 715k subscribers although I am guessing this has dipped substantially recently with #CancelMykaStauffer trending on Twitter.

Until very recently Myka and her husband James were parents to 5 wonderful children; 4 biological children and 1 which was adopted from China, his name is Huxley. As of yesterday they have been in the news because they have chosen to re-home their adoptive child because he has autism and behavioural difficulties.

It pained me to give her views which inadvertently lines her pockets but I wanted to understand who these people were before I threw my 2 pence in.

There are numerous videos about Huxley before he was even Huxley if that makes sense and the videos on average have 75k views. Three years ago she made a video discussing how much she earns from YouTube but I’m not going to lie I could not be bothered to listen to it… I have a good paperback on the go and didn’t want to waste any more time on her than needed so I went onto a site that details the net worth of YouTube channels. Her site is worth $167k 💰 and her family’s daily vlog site is worth $33k 💰and the videos of her journey with Huxley have definitely contributed to that in a big way. Even the video uploaded about ‘re-homing’ Huxley will be earning her money which is disgusting. It currently has almost 1m views. No doubt her highest viewed video to date.
If its about the views for them maybe she could give up one of her biological children next and hit 2 mil!!!
She used Huxley to get money before she even officially had him. She asked her subscribers to partake in fundraiser for him by donating $5 for a jigsaw piece. It was a 1000 piece jigsaw and was the first image she would reveal of Huxley… Well I couldn’t find the link for the fundraiser 😲 but when I looked on some forums I found out that apparently It was just a link to send money directly into Myka’s paypal account.

She did state she would the names of everyone who donates in a baby book for when he was older… Hmm wonder what happened to that! 😡

My first thought when stalking her YouTube channel was that her videos are not my kind of thing, they portray her as a perfect parent, wife and housekeeper which is unattainable and puts pressure on her subscribers to be like that.
I love Mrs Hinch but in a previous post I’m pretty sure I told her to go and fuck herself on one of my bad days. Myka seems to have a very high opinion of herself and from the posts she has shared not relating to Huxley I feel like she is what I like to call a MOMsplainer (another parent that talks to you as if you are neglecting your child, whether it’s on breast feeding, milestones or a vegan diet, they will give you unsolicited bias advice on anything) and I don’t have time for that so she is most definitely someone who’s videos I usually wouldn’t give the time of day.

My second thought is that if she is telling the truth about why she is sharing her adoption journey then we are quite similar in our thought process. Very similar to my statement when we started writing about William, she claims she is sharing her journey to help others going through the same thing and to help educate people in the process. Believe me I’m not relishing in this comparison.

Either Myka is an exceptional actress or she legitimately has the right reasons on some level at wanting to adopt this child. The emotions she display often come across as extremely raw and in parts I really felt for her during the adoption process videos.

This is the first video she posted with the announcement of their intentions.

What upset me on this video was that they are talking about fostering before adoption but how it’s not for them because they wouldn’t be able to give them back… ARE YOU FUCKING KIDDING ME! 🤬

One thing I learnt from watching what felt like a million of these videos was that they specifically went for a ‘special focus’ adoption which means you are taking in a child knowing they have medical issues from the get go… I will repeat. THEY CHOSE THIS ROUTE!
This is  a direct quote from one the video’s in which she talks about Huxley’s diagnosis (this isn’t shared at this point) and what it means to them. They had received 3 different diagnosis’s at this point.

This is our boy and we don’t need to consult with any more physicians until I bring this little guy home. He’s our son and that’s that. We’re not going to trade him in. we’re not going to return him. He’s our boy.

So this crap about not being made aware of his need is absolute horse shit! in a direct quote… They didn’t want to know!

Huxley’s Gotcha Day video is heart-breaking and I’m not going to lie, my little book (a purple one this time for the blog) is speckled with tears. A gotcha Day is the day in which adoptive parents can officially take their child home. This should have been his happily ever after. 😥

From what I can figure out from their multiple levels of social media is that Huxley hadn’t appeared since late March but his appearances had been dwindling since the back end of 2019.

A post has resurfaced in which she is complaining and seeking help on a forum for parents who have also adopted from china, She is upset because Huxley is obsessed with food and will watch everyone eat and it ‘drives her husband bonkers’ well William takes food of strangers plates in restaurants and will actively enter zombie mode to get to what you have if he wants it, biting included. He has also on several occasions decided it is appropriate to come sit on my knee whilst I go to toilet… Kids are kids 🚽

The video itself is very well staged, They are both wearing white, a very common symbol of innocence. She is wearing her glasses which makes it difficult to tell if her high pitched whining is actually accompanied by proper tears.

‘do I feel like a failure as a mom? yes like 500%’

I hate to break it to you tiny tears but you were never his mom in the first place if you could do this!

Coming from the woman who seems to share everything on YouTube, she is explaining why there is no proof of these behaviours which were so difficult to deal with!
She explains that little Huxley has gone to a new mommy who has medical training and the adoption agency have said they are a wonderful fit… I’m pretty sure in the announcement about adopting or one of the many that followed, you said you were prepared for the potential conditions of ‘special focus’ children because you were a registered nurse?!👩‍⚕️

I don’t think there is much more I can say on the subject, I do wonder if he had been her biological son would she have done the same? I could never imagine our lives without William, He’s challenging and can be naughty and I’ve often joked about locking him in a cupboard but he’s my life. My son 💙

FYI – whilst writing this Myka Stauffer has lost 2000 subscribers but her video is now on 1.1 mil.

Posted in Reviews

Book Review

Autism.
How to raise a happy autistic child.
By Jessie Hewitson

OK so I want to start by saying the cover and title of this book really put me off. It felt a little too ‘self helpy’ for my liking and although I needed guidance I want quite ready for the self help section of amazon if you know what I mean.
The book itself was recommended on multiple sites and Facebook pages for parents ‘finding their feet’ in the turbulent waters of ASD.
It wasn’t until Debs told me to read it did I buy it… well almost. I put it in my Amazon basket and decided I was ready a few months later.

My review may come across a little scatty but I am writing it as I read and I have a nasty habit of putting books down and forgetting they exist. (9 months I tried to Big Little Lies and still never finished it.) Don’t get me wrong I love reading but I have to really be enthralled by the characters or story line for it keep me interested. Now Harry potter is a book I can read over and over again. In fact I had read all 7 books to William before he turned one. We even read Cursed Child but we try not to discuss that monstrosity in this house.

I want to kick my review off with a quote from one of the first pages in her book.

Lots of mothers and fathers will tell you they didn’t know what they are doing when their newborn baby was first handed to them. But if your child is autistic and you aren’t, then you really don’t know what you are doing and most likely wont for years.

I should have read this book a year ago and I’m not the only one. I couldn’t put the book down for the first few chapters which is always a great sign.
Have any of you heard of Donald Triplett?
Well neither had I!

This is Donald Triplett.
He was the first ever person to be officially diagnosed with autism.
Case number 1. Numero uno. Patient zero.
His parents were told to put him in an institution… and they did!!! Can you imagine giving up on your child like that? I can only imagine what was going on in their head.
Thankfully after a year they went back to collect him. He was their child not a puppy you can return to the pound.

Donald is now 87 years old. He has had a successful career as a bank teller, drives his own car and enjoys travelling the world. Donald is an inspiration to anyone with autism and hope from any parent of a child with autism who thinks its no longer possible for their child to live a ‘normal’ life. My advice to those parents and believe me its something I have to remind myself is to think of Donald.
When things get exceptionally tough and my head goes to all those dark thoughts about things William might never do. I need to remind myself to think of Donald.

If you have read our post about the poem entitled Welcome to Holland you will understand why this next exert really resonates with me. If you haven’t read it then click the clink 😊

Imagine you are a British person married to a fellow Brit; brought up in this country and used to the culture, food and language.
You then have a child together and discover that when the child is 5 years old, they are actually from, say, France.
A different culture. They find some of your food disgusting, they speak another language, its a hell of a shock but eventually it makes sense: this is why you felt so at sea and found it hard to communicate with them. You knew on an intuitive level there was a difference but couldn’t put your finger on it.
You blame the fact they’re French, that’s the reason I can’t play with my baby or soothe them you tell yourself: how did I not realise for all these years that my own child came from a different country?
You start to imagine what it must have been like for them to have a parent who didn’t understand that their experiences were so different…
But the problem isn’t that they are French. the problem is the not realising your child was French, as well as not knowing much about France.
Once you learn the language things get a lot better.

The book has introduced me to the term ‘Refrigerator Mother’
in 1949 Leo Kanner (who diagnosed Donald) suggested that autism was a response to a lack of maternal warmth, in fact he went as far to condemn parents of autistic children. Bruno Bettleheim took this theory and ran with it resulting in the ‘Refrigerator Mother’ theory becoming the mainstream consensus as a reason for autism.

Thank God this was way before my time because I feel irrationally guilty now but imagine if someone had told me it was all my fault because I didn’t love my child enough. It would be devastating. My heart breaks for all the mother back then who already struggled to bond with their babies.

It wasn’t until the 70s when 2 British doctors; Lorna Wing and Judith Gould developed a better understanding of autism. Lorna who had a daughter with autism knew firsthand that the ‘Refrigerator Mother’ theory was absolute bullshit and set out to prove both Kanner and Bettleheim wrong.
She concluded that autism was in fact a spectrum meaning it was most definitely not as rare as her predecessors had claimed.

The two men had started the job of establishing what autism is but like any job, the men (or at least Dave anyways) never finished it and the women got fed up of waiting so finished it themselves.
Before you jump on me… there was a hole in my bedroom wall for two years that I eventually fixed 🤣

Jessie talks in depth about building a team. This team helps both parents and child and can include professionals, friends or family members and its made me think of our team and how its members came to us in the most surprising ways.

First on our team is my amazing mother (honestly look at her, how beautiful is she?!) and our best friend Debs.
Both from day one slowly dripped into our ears that something wasn’t quite right, William wasn’t meeting his milestones and originally they could be laughed off with a joke ‘Oh he’s just lazy like his dad’
I’m not going to lie either they weren’t always met with nice responses and I remember yelling at my mom through tears ‘don’t you think I know!’ and I cringe thinking of that conversation now because even though I was angry it was probably the first time I admitted out loud something was wrong.

Ian, I’m not going to lie I have known him for probably over a decade but we had never been ‘friends’ until maybe about 2 years ago. He was kind enough to drive me home from work when I got stuck for a bus. It took a few journeys before broaching the subject of his little boy and asking not so subtle questions… ‘When did you first know?’
Well its safe to say he saw straight through me and soon our chats about our children’s development became a regular occurrence and were something I looked forward to as I could speak openly without being judged.
Fast forward to present day and Ian has done so much for us whether it is letting us know what certain acronyms mean, what processes need to be followed or what help we can get and from where. Only the other day he spent 45 mins on the phone with me helping me fill out a form and recommending drinking cups that William wont chew through 😬
I can safely say that I am ashamed it took me so long to get to know Ian as in his own words he is skilled at being a good person and a fucking arsehole at the same time!

My sister H who listened to me bitch and moan when the comments about Williams development stopped being subtle. Who has answered the phone and celebrated with me every time I have cried and laughed because William looked at me or touched bread or did something that other parents see every day.

Emma, Tish & Danielle who are always on hand to listen to me rant and are Willing to spend their free time doing William friendly activities that don’t necessarily keep their own children entertained.

These are but a few people but there are so many more.
Everyone that asks after William, thinks of him and those that read our blog are all supporting us and we are so grateful for each and everyone of you. I don’t think we could be so open about our journey with out you all.

The professionals involved are equally amazing, Laura, Linda and Val are his amazing support team at nursery. We have recently been contacted by our local school nursery as we had put his name down for a place before we have even moved house. It’s that close I could literally throw William like rugby ball from the front door and he would be there. We have decided we no longer want a place for him, not just because he wont be going to the school but the ladies at his current nursery have been amazing and William has bonded with each of them. Why mess with perfection?
Lisa from the council who attends ever meeting and has called to check in with us during this pandemic to make sure the three of us were doing OK. Not to mention responding to my slightly panicked emails about the recent EHCP announcement.
Sarah, a real life wonder woman! Our health visitor is truly amazing. I really hope her other families appreciate her as much as we do. We couldn’t have done half and a quarter of what we have without her. We moved house and even though we are outside her ‘jurisdiction’ she has stayed with us and continues to turn up to all of Williams meetings despite being over worked.

Jessie explains that it will take a very long time to fully establish your team both personal and professional. I know as William gets older his professional help will change to match his needs and our personal one may differ as people flit in and out of our lives and we are trying to prepare for it as daunting as it may be. William isn’t the only one in our family who doesn’t adapt well to change 😳

‘No one accepted that there was anything wrong, but looked at me as a bad parent, like I was trying to seek attention.’

‘Many of my family members and friends asked “Why are you accepting this label?!”

‘They didn’t want to talk about autism and just saw his behaviour as that of a typical boy. I have chosen not to have contact with my family any longer.’

Vanessa Bobb on her journey with her autistic son Nathaniel.

Vanessa is is the co founder of a2ndvoice which specialises in helping BAME (Black, Asian & Minority Ethnic) parents supporting autistic children and adults.

Children from BAME communities are less likely to be diagnosed with autism than white children. There are massive racial disparities when it comes to obtaining an ASD diagnosis. Hispanic children are 65% less likely and black children 19% less likely to receive an autism diagnosis than a white child.
Jessie explains in her book that she found pretty much nothing in relation to autism within the BAME communities. Not because it is less prevalent within their race but because there are certain barriers.
Some languages do not have a word or phrase for Autism and a Somali parent is quoted stating her family and friend refer to their daughter as ‘Crazy Girl’ (If you read our post about vaccines you will recall Andrew Wakefield preying on a Somali community which resulted in an out break of measles.) It is not uncommon that families will not have access to an interpreter for their meetings meaning and that they will be forced to rely on relatives, friends or often children to interpret meetings they do not necessarily understand.
Vanessa Bobb states there is a real fear that within her community that this is just another label for black boys. The misdiagnosis of African-American children is FIVE TIMES higher than that of any other race! Five times? Is there that much of a difference between white children and black children? I don’t think so!

Jessie explains that she uses list to organise her life and her sons. I love Jessie for this! I also love lists! I have lists about lists, lists about when William has had a bowel movement, lists about when he has slept through the night, honestly I fucking love lists! They not only help me with William but they also help me function in day to day life.

Don’t wait for someone; the school, your GP, the government to help your child.
Make them help your child!

Parents often lose hope and according to Dr Stella Acquarone it is her job as a professional to tell parents that it is going to be a good life for both them and their child.

One thing I’ve become increasingly aware of is how rarely you see the words ‘Happy’ and ‘Autistic’ in the same sentence. It is almost as if we think autism is so awful that there is no point in aiming as high as happy for our children

It was only today that I filled out our ‘Parents View’ form for our PCP meeting which is to support our EHCP application. The final section asks ‘What are your hopes and aspirations for your child’s future?’ and our only answer was for him to be happy. We don’t want him to be rich or famous. Just happy.
Isn’t that what we all want for our children? Why should it be different if our children are autistic?

Jessie explains that she started writing Chapter 8 – learning to play by discussing the best ways to teach your child to play with you but eventually scrapped that idea because in her words.

Its not just your autistic child who is having difficulties with play. Its you too. The parent, family member or carer doesn’t know how to play with the autistic child anymore than the child does with them.

She spoke about putting on a show, this is something all parents do but for parents of autistic children it is exceptionally hard. By doing this you are focusing your energy on yourself and not in spending time with your child. I am guilty of this. I have tried to put on a show. Look at my normal little family doing this, look at this… its all fake.
She describes waiting for her son to start behaving normally. Something we still find ourselves doing. By waiting for something to happen you can potentially miss what is actually happening around you.

The book fully listed pro’s and cons of different types of schooling. A must read section for anyone with a child starting their school applications soon.
I do wish there were clear instructions in regards to what to do with schooling but I know that’s not possible. What works for one child wouldn’t necessarily work for another. I just worry that we will make the wrong decisions but I suppose every parent has that worry whether their child is autistic or not.
We believe based on Williams need that a special school would be the best fit for him and the pro’s and con’s have solidified that for us. There is even a handy list of questions to ask when viewing a special school which I will most definitely transfer to my trusty notebook when the time is right to visit.

Mind Blowing Facts about Funding!
Mainstream schools receive £6,000 per year for per pupil with SEN. 💰
Special schools receive £10,000 per pupil per year. 💰
If the schools feel this funding isn’t adequate they can appeal for more.

I have already read many horror stories about local authorities and how little support the give families with children with SEN. Jessie states that when she is in her exercise class and partakes in boxing that she she doesn’t picture a person to punch but in fact pictures her local authority.
I want to share her story of obtaining an EHCP document, I have shortened it a little as I have used that many exerts in this review that I may as well have just scanned each and every page for you.

  • The journey starts and the document states black is white.
  • But black obviously isn’t white so you call them to correct it but no one ever answers.
  • You resort to email and wait for a reply.
    Finally when it arrives it states that black is definitely white.
  • You have to reply and explain the law states black is actually black.
  • They never reply and you have to hound them.
  • When they finally respond they tell you its going to their SEN panel for discussion
    This can take up yo a month and yet you still have to hound them for an answer.
  • The panel agrees that black is white
  • You are forced to go to a tribunal in which the council drag out the process with £1000’s of tax payer money. Money that could be better spent elsewhere.
  • It is finally settled by a 2 person panel who advise black is black. It was always black.
  • White was never black.
    But it was in fact a cheaper colour than black and the local authority hoped you would give up.
  • This isn’t the end.
    renegotiation’s of what colour black is must take place at least once a year.

We are just dipping our toes into the murky waters of the EHCP process and we really need black to be black but we are prepared to fight if we need to.
According to Jessie the EHCP process should take 6 weeks but only 58% of local authorities can stick to this time frame. We have been told it can take up to 10 weeks so I am presuming that it has been a long time since Hull has been in the 58%
Some local authorities decline all EHCP requests upon first application in a disgusting way to manage their workload hoping the parents wont try again.

The devil is in the (lack of) detail
EHCPs can be vague leaving them open to interpretation meaning it can sound like they are going to provide all the support your child needs but the way in which it is worded can mean they will only get a fraction of this support. They need to be exceptional detailed with time frames and what if’s.

I think this book is a must read to any parent who has or suspects they have an autistic child. Its a really well written manual of what is to be expected and prepares you for the pitfalls of ‘support’ you will receive from the authorities.
Some of the sections weren’t relevant to William due to his specific difficulties but as autism a spectrum this book would have been a hell of a lot bigger than its 284 pages should she have researched and included every possible scenario for an autistic child.
The book is absolutely brilliant and touched on or delved into so many subjects that I now feel a little more confident having read it and confidence is something a parent of an autistic child often lacks. I feel over the coming years this book will be highlighted, dogeared and full of scribbles as I feel we will be pulling it out before each new leg of our journey. Thank you Jessie! 👏