The dangers with books on ADHD and autism

In Sweden there is a game called “Fia med Knuff” and a while ago, I was recommended a book called “Sofia med Knuff – inte ett dugg annorlunda” (“Sofia with a shove – not different at all”), which title is a pun on this game’s name. It is supposedly a book about what it feels like to be eight years old and have ADHD. But I fail to see what the game and book have in common, more than that you can get knocked off-balance or get knocked out in school, if you do not receive the help and understanding which you need. On the other hand, the game, is all about knocking off your opponents pieces off the board, while you yourself get your own pieces to goal. And is that not what an autistic person does? Not thinking about how the opponents will feel when having their pieces taken off the board? A person with ADHD, is not quite as self-centred as that.

But let us leave the game itself, and move over to the book, which has been advertised heavily on Facebook and especially in the ADHD group, “Underbara ADHD”. I decided to not invest any money in this book, since it is not a text-book on how to help your child with ADHD. I had the library buy it. It is a book about Sofia and I can not remember the details about it, whether Sofia exists or not, if she is the daughter of the author or not. But I will always say this, about all books that are meant to enlighten people about ADHD and autism: What is true for one child, is not true for another, what works for one family does not work for another. You must never compare yourself to what you read. It will cripple you! Every human being is unique and even though books like this CAN help you to not feel alone, they are never the recipe for success. A book written by a parent, is not going to help you in your parenting, since your circumstances are different. And a book written by a psychologist is not guaranteed to help you, since at the end of the day, the psychologist goes home to his or her perfectly normal family, and she or he will NEVER know what it is like to live in it all, 24 hours a day.

I did not like this book. I am going to be honest, but I did not feel this a good description of what ADHD is at all. It started out

Sofia with a shove – not at all different

fine and my son with ADHD recognised at once what she has, because he has it too. But then it stopped being ADHD in our opinion and what the author was really describing, was nothing but Asperger’s. And then I ask myself, what I have asked myself for years: What is really, I mean REALLY the difference between ADHD and autism? Sure, there are subtle differences like hyper activity in the ADHD child. And biologically one has too much of one chemical in the brain (ADHD) while the other has too little (Autism) of the same chemical. But that said, what is going on then, when your child has both? I do not have the answers, but I will say this, that I doubt that Sofia would get just an ADHD diagnosis, if tested today at BUP in Lund, but she would also get one of Asperger’s. And since they are now stopping with that particular name for it and calling everything autism, she would indeed get an autism diagnosis.

If we go back to the title of the book, I must say that telling people that these children are not different at all, is an outright lie. They are different. Everyone can see that and hear it. That is why they get a diagnosis in the first place! Because they need help. Because their ways are so different from the rest of society’s, that they do not fit in. Their ways are causing them problems. Their way of thinking is different. That is how habilitation explained autism to my older son “Kitty”, when that diagnosis was added to his ADHD one: “Autism is thinking in a different way”. So do not give a book a name which claims that these children are not different. They are. But in many ways, in a good way. They are different yes, but the thing which ought to be pressed, is that it is alright to be different. Or should be in a perfect society. But society is not perfect, is it. Everyone judges. USA even has a president today, who has no qualms with pointing out that different is NOT alright. The title of the book, needs to be changed!

I do agree with the author’s inscription: “To all fantastic children who struggle to fit in! You are perfect just the way you are. It is the school and the rest of society, which should be adapted around you.” It has to be, if these children are going to succeed. If they fail, we will get a dangerous society. And it will cost more, than preventive measures.

In the book, we get to follow Sofia for about 24 hours. And during those 24 hours, the author crams in all of Sofia’s symptoms:

1. Sofia has a best friend who is very tolerant. Sofia is always the one in charge, while her friend Molly adapts to her wishes. Sofia is the one who comes up with the games to play. Since children with autism have a difficult time to play, I would say that this symptom is one of ADHD. My son’s teacher always used to complain that he wanted to be in charge and decide what games should be played. His classmates were NOT tolerant though and his Catholic old-fashioned teacher saw his “problem” as a real bad character flaw. One that we needed to talk to him about, so he would cease doing what he was doing at recess. He was not allowed to be himself. He was not supposed to share his wild ideas so freely. Even if some children without imagination, enjoyed his ideas!

2. Small children are screaming beside  the playground in the school yard and Sofia has a tough time handling screaming and loud noises. This is a clear sign of autism! Being sensitive to noise. But they are all sensitive to different senses. My oldest son Johannes can not stand the light, nor noise made by others. But it can be anything from touch, smell, taste to sound and light. My youngest son “Gubby” have a tough time with texture and his brother “Boo” with touch. (I have four autistic son’s, so I do have a little bit of experience to take from.)

3. When Sofia finds out that Molly is going on vacation to Spain for two weeks, she has a melt down. Alone for two weeks. She gets aggressive. Kicks a football goal and hits Molly. This is also autism in my opinion. Not being able to see the other’s side to things. Being upset about the change about to happen. Things not becoming the way you expected it to. Both ADHD and autism like routines and do not want changes. But it is the autistic child who gets a big time melt down, when things are about to change or has changed. “Boo” screaming his head off when his best friend F. is not visiting his grandmother as usual, on Friday afternoons. The internet having problems, when “Kitty” planned on playing on the computer, brings a meltdown out of this world.

4. When school is boring it is tough to sit still. Clearly an ADHD problem. But, my youngest son “Gubby”, who displays very clear signs of autism to everyone, does something which his other autistic brothers do not do. He “flaxes” like a bird. His arms go up and down like a bird preparing to take off in flight and he runs when doing this. Or he hits his wrists together like a seal. He does this when upset, tired, happy, confused, when he doesn’t know what to do, when something exciting is happening and when he gets BORED. So, not sitting still when things are getting boring, is a grey zone.

5. To say that ADHD is a different way to act, a different way to think, is getting too close to autism, in my opinion. And to any other mental disability for that matter. A better way to describe ADHD would be to not have any breaks. To act before you think. To live like every minute is the last. To think outside the box. Not being able to concentrate for too long. And to not being able to imagine the consequences before it is too late. Your thoughts always wandering off.

6. With every diagnosis a child gets, it is important to stress to the child, that the diagnosis is just a label for how the child acts and thinks. That the child is not its diagnosis and that it is the same person before the verdict, as after. This is discussed in the middle of the book, where Sofia wonders if she is a different person after the psychologist has told her that she has ADHD. And not wanting other people to know about it, even though she has seen that it has changed her teacher’s tolerance level. This is something which ought to be discussed more. Who does one tell? Not all parents and classmates will handle it in the correct manner. They will use the information against the parent and against the child. It will in many cases be the cause for bullying. The well-meaning parent of the child, having given the bullies the proper, perfect ammunition, by telling.

7. Sofia wants leggings or boy’s clothes, since they do not hurt and do not sit tight. This is as autistic as it can be. To have an autistic child means that you are on a constant hunt for the right clothes. Seams that do not hurt, trousers without hurting buttons or without buttons and zippers all together, since some children like mine, can’t handle those two. One child not being able to stand the touch of the fabric, so that child wanting baggy trousers that can just be pulled up. Another child not being able to handle the air between skin and fabric and wanting tight things. That child also being afraid of dropping the trousers when moving. This is AUTISM in my world and it is a constant struggle for the parent to find the right items in a world of fashion, that does not cater to needs, only to popularity and non-autistic designers wanting to try out new ideas. Part of the problem also being that from the age of eight, children are supposed to dress like miniature teenagers and 20 somethings. The clothes are not made to move in. And they are not made for children with diagnoses who are always a couple of years behind their peers in maturity. Still playing or moving around, instead of sitting bent over a mobile phone!

8. Sofia, at eight, only owns one kind of books and those are cook books. An entire bookcase full of them. Obsession and autism go hand in hand. My “Gubby” is obsessed with houses. Building them on Minecraft, watching restoration programs on TV, asking questions his mother can not answer, about house building details and suggesting that we stop at strangers’ houses to go in and have a look around, to determine if they are modern houses or not. Needless to say, one has to put a stop somewhere. But it has him very disappointed. Sofia’s cooking interest goes beyond interest. It is an obsession and not quite “normal” for an eight year-old.

9. Sofia is good at maths. She is ahead of everyone. This is most unusual for a child with ADHD,  since they get bored with repetitive things like math problems are, in math books. But this girl has finished the book ahead of everyone. This to me, also screams Asperger’s. It is very important though to NEVER assume that an autistic person has a special talent. You must never ever ask “What is your talent then?”. Mozart might have been a genius. Einstein the same. But only about 5% or less of autistic people, have a special talent. All the rest, are like us. Average or even have a low IQ. I would say to Sofia’s teacher: Let her do what she is good at! Do not hold her back. Because what these children have real problems with, is always self-esteem. Let them feel and know that they are good at, at least one thing, and let them thrive there! They get so much bad feedback from teachers, class mates, other children, people around them, that they must be allowed to shine, if possible. It will outweigh everything they are not so good at.

10. Sofia can not think if it is too noisy, nor if it is too quiet. And it must not be messy around her. Is this an ADHD symptom though? My autistic sons have all sat with head phones (the ones without a cord connected to some audio device.) They shut out all background noise that can be difficult to an autistic child. But you hear when someone speaks to you. I would say that both the ADHD group and the autism group have a difficult time with mess and noise. And today’s saving schemes in the schools, due to councils lacking the funds, have made school a nightmare to all these children, since the results have become classes with 30 students in each. A room full of 30 children is not going to be quiet. Unless one has an Austrian fighter pilot for a teacher, like I did in high school. We were scared stiff and you could hear a needle drop. But that was a big exception to the rule. In one way, these saving schemes are bad for the children who already have a diagnosis, but they have also caused the problems in the first place. Small classes mean peace and quiet, and mean that ADHD might never be discovered. You only get a diagnosis when there is a problem. And in a good environment, a lot of the symptoms will not show or be so obvious!

11. Sofia has bad habits like whistling, constantly clearing her throat in class, especially when it is quiet, and sitting drumming on her leg, when watching TV. This vex people. Autistic people have this “problem”. They get obsessed with it and can not stop. Snapping fingers, hitting their heads, flaxing like my “Gubby” does, clapping wrists like he does, clearing the throat is something both he and “Kitty” do, making noises when eating… I have never heard of it being something done by a person with ADHD.

12. But speaking out of turn, definitely is. Children but also grown ups with ADHD, can not wait their turn, they are too impatient for that. At the same time, a child or grown up with autism, will also interrupt and they speak on something entirely different from what the rest of the group is discussing.

13. Chewing on her clothes, has nothing to do with ADHD! It is clearly autism. It is done unconsciously, as is chewing on other things and pulling at clothes so that the neck lines get enormous or break.

14. Before “Kitty” received his autism diagnosis and only had his ADHD one, he had a difficult time standing in queue for the school canteen. Of course there was kicking and shoving. But also bullying and the noise level atrocious. But to be honest, his autism did not fly on him one day. It was always there, hiding under the hyperactivity. I would say that the school canteen situation is tough on both. It is not clearly an ADHD thing. I for one am delighted that both “Boo” and “Gubby” are at schools where there are no canteens. They all eat in their classrooms and the noise level can thereby be kept to a minimum.

15. Sofia has problems with gym class since there are certain things she can not do physically. There is nothing which connects ADHD with motor skill problems, but there is with autism. “Boo” has gross motor problems and fine motor problems which is very common in autism. He is clumsy in other words and can not partake in ball games and many other things, since it is physically impossible for him, on top of getting vexed with others. Sofia does not want to undress either. At “Kitty’s” resource school/special needs school, there is a rule that they do not have to change clothes for gym nor do they have to shower afterwards. Because one of the things the teachers have understood, is that autistic people do not like getting undressed in front of others. But I would say that it has something to do with reaching puberty, as well. My two younger boys, 10 and 8, have no problems with ripping off their clothes, at the pool, on the beach or in any place really, in front of spectators, because they do not understand that the social code says NO. In other words, I would not say that this symptom of Sofia’s is an ADHD one. Nor do I believe for a second, that an eight year old would have the problem, even if it is autistic, unless she comes from a very prudish family.

16. Connected with this, is the problem of not wanting to use public loos and the ones at school. Autism means noticing the smallest imperfections. Including dirt and pee drops. Obsessive Compulsiveness goes together, hand in hand, with autism. Washing your hands over and over again. Not wanting to get dirty. Not wanting to get wet. “Gubby” will change clothes if he gets a drop of water on them. I have to inspect his hands, since he does not feel clean. He can not stand to wear hand lotion even though we have to put it on, because his hands are so dry they crack and bleed. He will walk around with his hands in the air begging to be allowed to wash it off. ADHD? Then why does my four boys with autism have this obsession? My oldest would never go to any other toilet, than ours at home. He managed to plug up the entire pipes with his heavy-duty dumps, because his number twos, were all backed up, condensed excrement! Our loo could not handle his behaviour! And his father went down with intestinal flu, after having to deal with the pipes and standing up to his knees in his son’s poo.

17. Sofia explains that her mum does not understand her. That she wants to hug her when Sofia does not want to. That she buys skirts when Sofia wants trousers. That she disturbs her, when Sofia wants to be alone. Most parents of children who have ADHD and autism, do their very best at learning what works for their child and not. Some are better at it than others of course. Fathers seem to have a more difficult time accepting these children’s eccentricities. But as my doctor says, perhaps they can only handle so much. We are all different in how much we can cope with. I can sense when hugging is not a good thing. When the child wants time out. When my boys need space. Their father and siblings do not have the same radar. But the sum of it all is, that it is important to find out what makes your child tick and trying to avoid it at all cost. You do not buy skirts for a girl who wants to wear trousers, because that will cause unnecessary conflict. Choose your battles. Clothes are not worth the effort.

18. The last thing brought up in Sofia’s day, is how she has forgot hot pads one too many times, when taking things out of the oven, so her mother has decided to not let her do it again. Poor work memory, is present in all my four boys. “Gubby” remembers bad things. He will stay away from things which has hurt, for the most part. And he will NOT agree to try again. Work memory being poor, is both an autistic and an ADHD thing.

When Sofia’s testing is brought up in the book, we are told that the psychologists at BUP (child & youth psychiatry) are there to help, that they are the ones that are testing the child and cares about the child. I do not agree, nor does anyone else in Sweden who have had to deal with BUP. I have met five different psychologists at BUP  so far and none of them have been nice. So why is the author saying that they are nice? My hypothyroid doctor says, “BUP is an awful place one should avoid. It is the last resort. I do not recommend anyone going there”. I totally agree with her. They are definitely not there for you, but are only the social services extended hand. They are there to see if you as a parent can cope and if you show one little crack in the facade, they will report you. To sit and say different in this book, is wrong.

So, what conclusion do I draw after reading this book to my children? Because this book is intended to be read in the classroom and to children. It is not a good book explaining ADHD. The child with ADHD will not recognise itself and that is BAD. A child with autism will not recognise itself either, since it does not see its own problems. My 13-year-old is still in a denial stage. If the book, does not describe your child’s behaviour in particular, your child will not recognise itself and thereby say that “Sofia is weird and I am nothing like that! I don’t do those things!”.

As a parent, I can recognise my children’s behaviour, in Sofia, or similar behaviours. But then comes the problem that the book clearly states that she has ADHD and my boys have autism. What conclusion am I to draw then? If I was a teacher or a parent whose child had just received a diagnosis of say autism, then I would start questioning the diagnosis, after reading this book. Now, “Kitty” has had his ADHD diagnosis since 2009, “Gubby” and “Boo” have had their autism diagnoses since 2014 and “Kitty” received his in 2015. I have read SO MUCH so far, that I can say that this book about Sofia is not a good book about ADHD. And if psychologists say that it is, then psychology frames need to be redefined. Then it is time, to pull ADHD in under the umbrella called autism spectrum. And then the entire system needs to be changed. Children with ADHD must be assigned assistants in school, they must be granted additional funding and they must receive all the help that autistic children are entitled too. In my opinion, if THIS book is a description of ADHD, then ADHD is just one variation of autism.

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