8 Years of Autism Awareness – A Reflection

This Sunday will mark my 8th Autism Awareness Day and Month. Originally it was to bring awareness of the very broad spectrum of autism and to push for more services for both autistic children and adults. Previously, autism was thought as a condition that severely affected children and was often confused as an intellectual disability. Now a vast majority of people know that it can be either mild or severe, and that those mild symptoms can still be impairing. Doctors, parents, teachers, siblings and autistic individuals have all taken part to raise awareness. Doctors and scientists have shared their increasing knowledge through research which has helped show autism as a real neurological difference and has explained much of the behaviour through science. Teachers, parents and siblings have shared their experience with taking care of someone with autism, but autistic people have given real insight into their everyday experience.

Every year on Autism Awareness Day I’ve shared my own experiences and through this blog I talk about my day to day life with autism, my struggles with interpersonal relationships and a detailed breakdown of my other symptoms.
I started this blog as a way to explain my experiences to family and friends, as I was not able to tell them these things face to face. Then parents of autistic children told them I helped them better understand what their child goes through, so now it’s become a portal of self-advocacy with a strong emphasis on making neurotypical people understand the autism experience, as well as what it’s like to live with ADHD and mental illness.

Eight years ago I was a very different person to how I am now. People who have only known me for a few years would not even recognize me from back then. I could not have a conversation with anyone. I was not aware that some of my behaviour could have been considered rude and when confronted about it I just thought people were overreacting and if they interrupted my routine I would have lost it at them, and then blamed them for not knowing that’s how I would have reacted. I wouldn’t initiate conversation with anyone. I didn’t really want to. Just prior to my diagnosis I had very severe social anxiety. My mind would freeze up when I sat with a group and though I may wanted to reply my mind was completely blank.

Post-Asperger’s syndrome diagnosis my social anxiety dissipated because I had a reason to why I was so different and I was fine with it. I didn’t worry so much about fitting in and I stopped trying to be like everyone else. I no longer envied them. Even when people made fun of me for being a nerd, I felt good that I didn’t have to go with the flow, what I called ‘collective consciousness.’
It took a couple weeks on Ritalin to make me want to talk to people though. It enhanced my empathetic ability and at the same time an online forum full of people with ADHD were teaching me more about being empathetic. Some of those posts would originally start out really hostile but by the end the more higher functioning members would be able to explain why people reacted like they did and that we need to respect differences of opinion, and always keep in mind how our words might impact others. It’s something I always noted and now it’s my default reaction to any type of news article I read, the inevitable flame war in the comments section and even how I perceive the political opposition (mainly conservatives).

Being on Ritalin made my mind feel so clear and it slowed down the noise in my brain enough that I had time to work on my social skills. I learned everything from physics to advance math and worked on a science fiction novel. The energy and clarity of mind it gave me allowed me to learn something new every day.
But then the side effects came in so I had to stop taking them, and some autistic symptoms once again became hard to manage but the social skills I learned in that time stayed intact.

In the last 5-6 years I’ve made the most progress in my social skills. It was mostly through higher functioning autistics basically revealing to me social customs and social hierarchy, most of which I ignore. I decided to learn and put into practice social skills that were polite but not ego stroking. I skipped over any rule that felt unnecessary to me, particularly the amount of lies you have to tell people to make them feel good about themselves. If I like what you’re wearing I’ll tell you, but I’m not going to congratulate you for dressing yourself like you’re a 3 year old.

My social skills are now advanced enough to have conversations with people in my very jumbled way of talking. My brain often gets stuck so conversations I start do not last long. I don’t really like talking when I hear myself talk. When people go out of their way to prove me wrong and their better conversationalists than me I just feel humiliated and really never want to talk to those people again. I mean what is the point of trying to make a person who can’t even speak one fluent sentence or even organize a sentence in their brain feel bad? I’m not giving all that effort to just be looked down on. Those people are not worth my time or respect. People like that have in the past made me just want to stop talking to people but I know there are some decent folks out there.

I’ve had to go back to reevaluating my social skills lately. I’m finding I’m getting hurt by people when it might not be their fault. Although, people use so little tact these days that they hardly notice when they’ve been rude. At times I wonder why I still bother to perfect my social skills when the rest of the world is losing theirs. But this is about me and becoming the best person I can be, even if people are becoming like the old me. Not because they have a developmental disorder either, but because they live on social media the lack of face to face engagement have lost much of that inborn empathy, not to mention the ADHD symptoms they mimic from being dependent on digital technology.

I don’t socialise that much these days anyway. When the opportunity arises I’ll take it but I’m not actively looking for it, kind of like when I was a kid. My latest ‘friends’ have just seemed to want to get something out of me and most other people want more of a take and take relationship. I do all the giving but get nothing in return. I don’t stick around those people for long.
I don’t feel connected to a single person on the Earth. I never have. There’s always this invisible wall between me and people. Whatever feeling people get from being with someone else I don’t feel it. A lot of people in the autistic community feel the same way. I’m not really saying that as a downer, more stating a fact.

As for autism awareness, well it’s time we moved on from awareness into acceptance. What that means is autistic people should still get treatment and services but they need to be included more in society and not forced to change so people can be more comfortable around them.  Autistic people have such intense focus on their interests that they can learn expert knowledge about them in a short time, and their logical brains which seem to give them a better understanding of technology is why so many employers encourage them to join I.T. The artistic autistics like me though find it harder to have our skills appreciated. I’ve been able to go pretty far in my photography. I started out as a fan who wanted to take photos of his favourite bands and then I got free access to some big shows and got to hang out with the bands. Now I’m a protest photographer which means I feel less nervous about going to protests (I don’t really have to chant words while working). I’ve been focusing more on story writing and my ADHD and my lifetime love of film has led me toward script writing. So, I can also be of some use even if I need a calculator to do math.

There are other behaviours autistics need to do in order to be able to cope. Stimming is one such thing. It’s anything from hand flapping to pacing to making noises. It may make people feel uncomfortable so parents and teachers may want to discourage the behaviour but it’s actually a good way to calm anxiety. I even do a bit of hand flapping when I start to feel anxious.

Our intense focus on interests should be encouraged too. Many us of have turned our interests into a career. It’s also a good way to ward off feelings of depression and be less focused on the things we struggle with. When I’ve returned home after having a disastrous social experience it’s good to know I can soon forget about it by focusing on something that makes me happy or that I’m actually good at.

So, when you hear about autism awareness in April ignore all the charities talking about how terrible autism is for families just so they can get a few bucks out of you, and instead focus on articles that talk about inclusion of autistic people and accepting them into the wider community. Because we are people just like you.

Spy

Advertisements

Stigma? What Stigma?

Hey peeps! Look who’s back writing another blog post. I told you I would. So, I’ve been following the ABC’s coverage of mental health awareness on TV and on social media and I’ve been impressed with the many forms of awareness they are using. After all, we all experience it differently. They’ve taken a ‘mental illness is an everybody thing’ approach to it, which I do understand – we all like to relate to each other – but for some of us mental illness can be genetic and our type of mental illness does not affect everyone. Some of us – ok me – believe that this type of mental illness is non-recoverable and it’s there for life and we’ve just got to deal with it the best we can. Of course, recovering from any mental illness is a difficult road to go down. I’ve had various forms and severities of social anxiety for most of my life. It took my voice away in childhood. And I still have some non-inherited forms of mental illness to overcome like PTSD and generalized anxiety disorder.

So, what is this inherited form of mental illness, I hear you say? Well, it’s a mood disorder, most likely bipolar 2. It triggered in my early 20s after I took any type of prescription med. I’m not here to criticize the Pharmaceutical industry. The medication worked for what it was designed for, it’s just that it did something else, which doesn’t happen to all people, just people with a family history of mood disorders. So kids: always look at your family medical history before taking drugs, especially the ones your teacher says you should be on.

Bipolar is my newest constant companion, together with autism and ADHD I really don’t know what each day will be like. I can wake up one morning and have little energy and at some part of the day or night be unable to contain my energy. I randomly go on spending sprees, say things to people I forget and commit to things without giving it much thought. Then at some point in an extreme exhausted state I may crash into a deep dark depression. Even writing about it changes my mood state so I’ve got to be careful.

First, negative thoughts seep in after days of over confidence. I go from thinking everything is possible and everyone loves me to doubts about my abilities to questioning who my friends really are. Then comes the pessimism and a cynical view of the world and the cruelest sarcasm towards people you could ever think I was capable of. And then I just keep sliding down, down, down. To the point I become incapable of making myself meals or can even get out of bed. My mind turns on a loop of very vivid thoughts of suicide; the moment before, the act and me gazing down at the world following my suicide. Then after a couple of hours I cycle out of it. I become hypomanic again. It’s an all-round positive mood, energetic and ready to give the world a big giant bear hug.

I know a few people who have actually had their friends commit suicide and it made me feel very uncomfortable and guilty to be around them and hear them going through that mourning process. I never used to empathise with people when thinking suicidal thoughts and people’s poor choice of words to comfort or encourage a deeply depressed person to rethink their decision didn’t help either. I couldn’t see things from the point of view of a suicide survivor and copped a lot of abuse for that. But I’m used to it. My old blog was trolled so much I had to delete it but I’m back and expecting it now so whatevs.

Then, when I became deeply depressed again, despite being on anti-depressants, I started to think about one friend in particular who had lost a friend who I didn’t want to upset again if I did kill myself. And I certainly didn’t want my friends and family to develop a mental illness because of the shock of my own suicide. Before I didn’t think they’d be a shock because I talked about it so much – I even think I wrote a status update that was an equivalent to a suicide note. Luckily, a few friends got behind me and started to encourage me and I felt better.

Now when deeply depressed, if I can’t avoid falling into it through constant gigging, playing video games, watching comedy and sci-fi, I will just experience it and focus more on the physical pain than emotional. Once I get control over my mind I can push my emotions in any direction. So, I will deny my depressed thoughts and just try to focus on the next mood cycle. I wouldn’t do this if I had unipolar depression but because I’m also a rapid cycler telling myself the feelings are just temporary works for me. So far.

I think in order for people to really grasp what bipolar is about I need to talk about my manic symptoms. First, I’ll explain the differences between hypomania and mania. Hypomania is the milder state but it’s a higher than usual ‘happy’ state to be in. You’re very motivated to do things, you might get a few creative ideas you’d like to try out and you want to be around people more. Together with the motivation and creative ideas you’ve got the energy to get everything done and you don’t even require that much rest or sleep.

Mania is the more serious state. I can only tell I’m manic by the wired-like stimulated state of my brain. I have non-stop racing thoughts, overflowing with 10 to 200 creative ideas I must accomplish NOW! I’m restless and anxious and my skin tingles in discomfort. Sounds are louder, lights are brighter- every sense is turned up way loud. This is the state you become delusional and psychotic in. You have higher ideas. You feel like you are enlightened and that everyone else is intellectually inferior to you. They can’t see what you can see. They’re stuck in this stiff collared world of facts and reason, and not into the Jungian dream-like utopia that you slipped in through the smallest crack in the universe. You have more energy than you’ve ever dreamed of and your legs don’t stop moving for days. You’ll pay for it later. You know depression will come but you tell yourself you’ll be like this forever, although, to be honest, you just want to go back to hypomania.

It’s not always so positive though. Mania and hypomania have an opposite evil twin. It’s sometimes called dysphoria or dark mania – it’s the ugly pessimistic and paranoid face of bipolar. Much of it is mixed with symptoms of anxiety and depression, though I’m still unsure if this is what constitutes a ‘mixed episode.’ You snap and yell and rant at people. At worst you have paranoid delusions about them. You’re impatient, anxious, losing confidence in yourself but still have a flair of arrogance about you. You still have all the energy of mania but all positivity is gone. This is actually the most dangerous state to be in because if feeling suicidal you’re impulsive enough to do it. You’re definitely ‘not in your own mind.’ People can become violent when like this.

Above I said mania was like a drug and indeed it is but no one goes on a constant high for days or months without making some mistakes. Those can be overspending, sharing your delusional ‘enlightened’ ideas with people, just ranting and raving and ending up in places you can’t remember how you got to. There’s a trail of destruction you’ve either got to clear up or run away from. You interact with a lot of people during this time, people who you may have to see again when you return to normal, unless you’re rapid cycling – if that’s the case then you’re probably going to repeat the same mistakes again.

In my first year of taking Ritalin for ADHD every dose made me manic, from at least day two of taking the drug. So I spent a whole year basically manic. Depression never came because I’d just take another dose. Eventually it did hit at the end of the year where I was also experiencing clusters of seizures. I was just waiting to die basically. I’d come up with some wild themes for my science fiction stories and books on Jung or Synchronicity took my mind into a new and exciting realm. It was incredible but it wasn’t real. Some of my delusions were very damaging to my mental health. I became obsessed with people, people I acted like I knew well and was destined to be with. That is one place I do not want to go to again. I thought I would never recover but my medication for anxiety has helped make that world disappear. I finally feel sane again.

The title of this post is kind of confusing but what I mean by that is before I was even aware there was such a stigma around mental illness, well, I sort of always talked about it as though I was talking about a hobby. I find psychology and neuroscience to be fascinating subjects and my underdeveloped social skills could not pick up that I may have been making people feel uncomfortable. I actually had to be told by someone that people might not want to be around me if I kept talking about it. Then after I was trolled severely after writing many manic fueled blog posts before I even realised that I could even be bipolar, I decided maybe I’ll just cut back on posting about mental illness and ADHD and autism. But lately I’ve been thinking censoring myself and giving in to the stigma just makes the stigma of mental illness even stronger and I felt better being open and honest about all my mental health issues and atypical neurological wirings. So, while I still may be aware that I’m making people uncomfortable I can just ignore it and keep on talking, or writing. It’s not like anyone will tell me when I make them feel uncomfortable.

October is even ADHD Awareness Month and because I’ve been unable to write my blog about inattentive ADHD, I’ve just been posting a few things on social media. I will eventually write that post though.

I also find educating myself about my illnesses, neurological disorders and other ailments makes me develop the best coping skills for dealing with them. I’m untreated bipolar only on anti-depressants for my severe anxiety, so the only treatment I can do is problem solving skills. Okay so I may have spent $300 or more in the last week and I’ve been mouthing off/ranting a lot and my upcoming gig list keeps growing because I’ve finally got the opportunity to photograph what bands I want, even the ones I need media access to, and not just photographing bands keeps me sane, but the preparation keeps me looking forward to something. Then there’s my recently reignited video game addiction which I really think helps keep my depression from triggering. I just get exhausted now which is ok. I’d rather have the tiredness and lack of motivation that comes with depression without any of the emotions.

So, this is me. A life of mental illness and unique brain structure. There’s no stigma here. It’s just my life. It’s wild, it’s messy, sometimes boring, other times exciting, scary, frustrating and then something unexpected happens.

It’s Time to Focus on the Important Things In Life

Sorry guys, I kind of left you hanging after I wrote the last blog post, with its whole ‘I don’t know what to do with my life’, ‘anxiety rules me’ and ‘maybe it’s just better if I -‘

The good news is I finally went to a doctor and got on some medication. How did that happen so quickly? It took me two years to muster up enough courage to nag someone to drive me to the doctor’s office and in about 10-15 minutes of seeing my new GP I get the medication I wanted and desperately needed for all those years.

The medication is Aropax/ Paxil/ Paroxetine, an SSRI anti-depressant, also used to treat anxiety. I was so anxious when talking to my doctor I couldn’t explain everything, but I said far more than I have ever said to a doctor when I had to see them alone. I had my iPad resting on my lap as I was skimming through a rather detailed list of mental health problems I had written down. It was all written down so formally it still makes me chuckle.

I didn’t really want to write another post until I was two weeks into this medication regime – it’s only been five days. But I have been struggling to know what to focus my mind on now. I still have am very much into my special interests but I’m also feeling rather skint, though to others I’m not. For the non-Australians/ British, skint just means being low on money. Everyone in Sydney seems to be saying it. I picked it up from my Funeral For a Friend forum buddies and obsessively watching Doctor Who and Torchwood. Usually, I read a couple of MARVEL and Star Trek fact files but I’ve had to cut back and just make do with the comic books I have now, which is a lot. Maybe when I feel better I’ll do more reading. I want to read all the movie tie-in books the the original Stargate motion picture, and possibly a few books from the TV series.

When I started taking Aropax I felt like it was only half working. I’m still taking a very low dose, but it feels like I still get some anxiety, depression and even the higher moods. I’m still a bit hyper today but not ridiculously though. A few days on I started to get the lethargic and apathetic feeling (to be honest, I felt like I didn’t want to be around people at all – which makes me worried because SSRI’s are known to make people feel homicidal – or I should really stop taking what I read on the internet seriously) but then I countered this by taking a 2000mg fish oil supplement, which since taking Ritalin has given me an awake stimulant feeling. I’ve been taking it for a few years to help me be more motivated and focused in place of taking stimulant medication. It works just as well, albeit with a shorter half-life but it doesn’t make me manic or rapid cycling.

That brings up another point. I no longer think I have bipolar disorder. My reasoning is that anti-depressants seem to be doing their job without throwing me into mania. Yes, I have had a few symptoms that make me think of mania, at least hypomania, but I’m still on just half a pill so a few of the old mood symptoms could be bleeding through. My theory is all along I have been dealing with a hormone imbalance caused by my time on the birth control pill that led to the development of PMDD (severe pms, dyphoria, suicidal feelings etc) and when I went on Ritalin a few years after going off the pill, it just completely upset my neurochemical balance, which produced manic symptoms everytime I took the pill. See, I thought because I had motivation, could focus, remember things better, and gave me this sudden desire to talk to people and I did it so well I was like a new person, that it was treating the ADHD and this is how most people with ADHD responded to the medication. I was wrong. I had incredible delusions and over confidence, on a single 10mg dose. Even on a 5mg dose.

Then came experiencing a trauma which completely messed with my brain producing all too common symptoms of PTSD. Once I was asked ‘how do you know it was PTSD?’ Well, the flashbacks of the trauma was a dead giveaway. I started to hallucinate when I walked in public. I remember thinking I was covered in blood. I remember seeing the faces of my attackers on the faces of strangers. I remember feeling threatened by any stranger on the street. And then the whole Aurora shooting thing happened which made the media make some very terrible accusations against autistic people and I got so paranoid toward people I thought they could tell I was autistic and were basically going to attack me because of this fact. So, I tried my best to suppress my autistic symptoms. Then I started to get obsessed about the autistic community fighting back against these accusations and during the obsessive-thought spiral I got trolled by a friend and their friends, and this begun the first of many friendship ties being cut to save me going off on some strange manic rant at them. It probably had to do with my PMDD too but since I developed PTSD I could no longer suppress the rage I felt about so many things and toward so many people. There are some people I miss that I know will never forgive me, and there are others I feel better about no longer having in my life. Both parties actually never gave me a chance to explain myself and then when I tried to said I was making excuses or just labeling myself.

PTSD also made it impossible to stay on Ritalin. Within an hour of taking the pill I would be thrown into impulsive behaviour and was now becoming depressed after the ‘mania’ crashed. I used to take more Ritalin to counter this and my depression never got that bad while Ritalin was in my system, but after I went off that’s when the occasional brief but very intense suicidal feelings started. But I started to just accept it and go through it because the worse the depression the higher a ‘mania’ was going to be.

So, now I’m on anti-depressants I’ve not had serious suicidal feelings or a panic attack, though some anxiety and depression remains. When I first started Aropax and felt the milder anxiety and depression I kept waiting to lose control of myself but it never happened, and it made me feel uncomfortable. I had to really talk myself through the process. “Look, you either get a little anxiety/depression or you get it so bad you either feel like your heart will explode or feel a desperate need to end your life.”

Now comes the testing phase. Time to test myself and put myself in situations that would usually trigger those symptoms of anxiety and depression. The big one is testing how I deal with change. I remember being on Aropax back in 2009 and no longer being that bothered by change. So far I think it’s too early to tell. But my one obstacle to overcome is getting to The Basement in Sydney in mid July. Normally, having to go to that venue would give me agonizing panic attacks and visions of my death happening over again in many ways, that I would just decide not to go. Basically, what happened last time. So, if I can finally go to music venues I’ve not been to before with only the slightest bit of nervousness then this medication would have been worth it.

The next test is overcoming intrusive and obsessional thoughts. This is when I start to become vague because the nature of these thoughts are disturbing. I know I’m not alone in experiencing them but I don’t want people who know me to think I think like this at all. They are thought intrusions anyway. I have no choice in the matter. They have at times completely taken over my life so I’ve forgotten what is most important, hence the blog post title. I have put them before friends and family and even getting help for my mental health issues. If anti-depressants don’t shut them out completely I’m going to have to take steps of my own to overcome them. Problem is they have helped me deal with anxious and depressed thoughts. But once I realise I no longer need to have this sanctuary of sorts to go to every time I become anxious or begin to doubt myself, then I will no longer see the need to revisit these thoughts.

Lastly, there’s my financial instability which is just a supreme amount of anxiety over not seeing a figure in my bank account that makes me feel secure. Say I was in a really good mood and you asked me for $300. That would make me panic, resist, avoid and if I ended up being convinced to pay you I would feel like I was manipulated, and that doesn’t help my ego. I would then storm through the streets wanting to tear them up and envisioning myself attacking people. That’s how bad my anxiety got. I’d also spend a few hours later feeling extremely suicidal. I could never do it though, even when I was sure I had to do it I could never do it. I had a plan too.

By the way, the anti-social thoughts are intrusive. I would rather go through the agony of seeing them in my head to save me from putting them into practice. I’d even inflict pain on myself before I touch another person. I’ve never really lost that much control of myself to think I could be a danger to other people. I have some very strong willpower or whatever the scientific definition is.

Currently, that figure in my account is the lowest it’s been in a long time so I’ve cut back on food, I’ve stopped buying my comic book fact files and have to put all plans to buy comic books and video games on hold. I’ve not had a panic attack though, except late at night when my little 10mg dose wears off. I just really need to learn that the figure in my account is not going to get lower and lower until nothing is left, that I just need to work out ways to manage my money better, and if I do run into problems I’m probably not going to be thrown out onto street. It’s actually making me nervous about going overseas. I want to go for the experience and to know that I can, but I don’t want to spend my money on all the usual stuff people do when they go overseas. It’s easy for me to be non-materialistic especially when I stop being impulsive. So, let’s hope these meds just keep on working.

What’s most important is my mental health begins to heal and I slowly let myself out in the world again. The world is more a danger to me than I am to it though. At times I feel like I’m not going to get better and I don’t have a future. There’s just so much to fix. There are physical health problems as well as mental. I’ve never really had a job too so I have to gain some experience when I am mentally well enough to do that. Then I’ve got to become more independent. It all just seems like too much. But this is going to be a slow process. I have to break everything up into steps. It’s a good thing I have excellent organisation skills.

All the things that have mattered the most to me I’ve got to put behind me, except for the band photography. I was able to do my photography without getting medical help but there was always the social issue. I may have made it worse by going on anti-depressants but at least no more band members I respect and look up to can’t see me in that manic speedy talker state again. But I will always do my band photography. It might have taken a grandiose delusion to make me commit to it again but now it’s taking realistic thinking to keep me doing it. It was a manic delusion that took me away from it in the first place. It really is where my future is heading. I’ve dedicated too many years to just pursue some other career. Even if I have just recently decided to focus on building my artistic skills again. That was also a given. I’ve been drawing since I was two, it was my semi-savant skill in primary school and I’m pretty good at it. I’m the type of art student who will finish my work early and go straight ahead with the few next lessons and refuse to listen to the teacher’s suggestion about how to fix up my work. It makes me sound like I’m the hardest person to work with. I’d take photography advice, maybe, just not when it comes to painting. Although I sound incredibly arrogant now I can at least admit to not being as good as many artistic people I know. I have this friend who sketches anyone from band members to sci-fi actors to anyone else she likes, and her drawings just blow me away. I don’t think I would ever have the patience to produce something that brilliant.

Is this blog post long enough yet? All you have to know about me is I’m doing much better on my anti-depressants and fish oil and I’m looking for ways to keep myself busy, while working on those areas in my life that usually had me paralyzed with fear or bedridden with depression. The next step might require going back on ADHD medication, something more slow release than what I was last on, that made me, for a want of a better word, manic. The psychiatrist I contacted has very expensive fees though so I may have to go back to my old psychiatrist, who basically refused to get me on anti-depression/anxiety medication or look into what my mood issues were about. But I’m taking that medication now and I really need is simple prescription of the many ADHD medications out there that I can try. For now though fish oil is doing a pretty bang up job.

ABC1’s KIDS ON SPEED? Reviewed

KOSscreen

Kids on Speed? is a 3-part documentary airing on ABC1 in Australia that focuses on the very controversial issue of over diagnosis of ADHD in children with problem behaviour and prescribing medication such as Ritalin as a quick fix for that behaviour. It is well known that doctors don’t always thoroughly assess a child properly before giving a diagnosis of ADHD and are soon to start them on stimulant medication without explaining or planning other methods of treatment with the parents, or even exploring other possibilities for their symptoms. At first the trailer and title alone makes you feel like this is just more negative media spin attacking Big Pharma and blaming the parents. Instead, it serves as a meeting ground for all sides of the debate to discuss a very important issue that has for far too long given the spotlight to the opposing side of the debate, who have the children’s best interest at heart but are missing the bigger picture: the fact that these children are struggling to control behaviour they don’t understand and the parents are trying to do what they think is best for them all the while shaking off ignorant criticism about the way they raise their children, from how they discipline them to what they feed them and how much time they allow them to watch TV or play a video game. And at the heart of it all is a very differently developed brain that struggles to keep up with the demands of a society that was built to cater for the average processing capabilities, what we living with a neurological disorder call the ‘neurotypical brain.’

Kids on Speed? is part documentary, part factual intervention and part social experiment. It brings together three experts, Prof. Mark Dadds, Prof. Michael Kohn and Dr. Samantha Hornery, and four families with five children with challenging behaviour. As well as trying to teach good behaviours in these children the experts, headed by Prof. Mark Dadds, also use a revolutionary system of retraining parents on how to deal with the problem behaviour.

In the first episode we are introduced to five playful charming and bright eyed youngsters with uncontrollable hyperactivity and poor impulse control leading to defiant and unruly behaviour. We meet Seth, a rambunctious six year old who it seems can barely sit still or focus for longer than a minute. He argues with his mother Emma and will refuse to listen to her and often ends up shrieking at the top of his lungs to have himself heard. Both his parents are frustrated with his behaviour and at a loss of how to control it. His father worries that he may have passed his ADHD onto his son. Seth’s poor ability to focus and willingly follow instruction is also leading to him falling behind in school.

The experts suspect a sleep disorder is leading to Seth’s mild ADHD but he also has oppositional defiance disorder (ODD), a behavioural disorder with a compulsive need to argue and disobey orders. The experts don’t recommend Seth take any medication.

Next there is brother and sister Samuel (6) and Emily (11) whose rough playing often ends up with one exerting too much force and hurting the other and a violent fight erupts from this. Both children are slipping behind in grades which is a worry for Emily especially because she is about to enter high school and some of Samuel’s threats to other children at school are disturbing to his parents.

Both Emily and Samuel are diagnosed with classic ADHD as well as ODD and medication is recommended.

The oldest out of the boys being seen by the experts is James, a big 10 year old boy whose explosive meltdowns mimic those of autism. Indeed, doctors had suspected it in him but he was diagnosed with ADHD. When he is not screaming and running about the place like most children in the program he is quietly spoken and seems to show a lot of emotional immaturity.

James is thought by the experts to have ODD instead of ADHD and emotional immaturity. He is the most puzzling case though and medication isn’t yet recommended.

Lastly there is 7 year old Corey, an only child who is dealing with more than the behavourial issues of ADHD. He has anxiety on top of his ADHD and past medication for it made him threaten to kill himself and other children. He was taken out of school and homeschooled by mother Kathryn who gave up a successful career to help him.

The experts all agree that he has ODD, ADHD, anxiety and also suspect autism. They recommend he go back on medication but start on the lowest dose possible.

It’s interesting that all of the children are given the diagnosis of ODD; their defiant behaviour seems to be out of frustration of having no control over their impulses. The ODD doesn’t seem to have manifested in their personality yet and hasn’t led to such conduct issues we often see in teenagers and young adults with the disorder who end up stealing, starting fires and engaging in other illegal activities.

Between each segment we are show newspaper clippings of often negative rhetoric about ADHD, headlines stating such things as ‘The Ritalin generation’, ‘Pillpoppers: 32,000 Kids Taking Drugs,’ and ‘Has Normal Childhood Become a Disorder?’ The ominous undertone probably acts to serve as a balance between describing facts of ADHD such as how changes in the brain of people with ADHD leads to problems focusing, organizing and controlling behaviour and from what we see the families deal with which is their everyday, but I think the balance is never truly reached and instead flips between explaining ADHD in a factual way and yet again casting doubt on the need to diagnose and medicate children confusing the audience to the aim of the documentary. But the simple fact here is that they tried to reach that balance.

samuelhornery

In episode two the treatment begins. The children on medication are beginning to show some promising results. They’re all doing their school work and are acting out less until the rebound effect hits Samuel and Emily after school. Corey is able to focus better but the Ritalin is making him too tired to continue on with his studies. The anti-anxiety medication will take time to work but already he seems calmer.

For the two children who medication wasn’t recommended for their behaviour seems a lot harder to control. There are moments where they seem to listen and obey but then act out again. This is where the new parenting strategies really come into play. It’s found that James progress depends on his parents getting along better and agreeing on parenting strategies. Seth’s sleep study is delayed and Prof. Mark Dadds has noticed that his mother Emma has not properly implemented the strategies they have discussed in their meetings but she acts like everything is going fine when in her follow-up meetings with him. By the final episode he really confronts her about it and it turns out she has her own demons to fight about her own childhood; when she is emotionally frustrated she begins to mimic behaviour that she picked up from her mother. But we see her trying her best to control her emotions around her son and he begins to show more progress.

Continuing into episode three we see even more improvement from Samuel, Emily and Corey. Corey is having a massive turnaround but is still finding it hard to socialise with other children and is not yet ready to go back to school. Seth is making some improvements but his poor sleep is affecting his overall behaviour the following day. Samuel and Emily are acting out after their medication wears off and parents take turns in putting them in time out. James’ family has to band together to help make things easier for him, literally. Father Stewart starts a family band and it’s good to see James being calm and focused while playing the drums. Even without medication both Seth and James begin to show improvements which does show that medication doesn’t always have to be necessary for children with ADHD. James is started on medication for the family meet-up retreat but reacts negatively to it and is taken off.

At the retreat the children take turns to talk about what they’ve learned from the course. Everyone is happy and smiling and the children are getting along well. In the first episode many of them – or all of them – couldn’t sit still or focus and were often disrupting, now they sit calmly and are attentive. None are fighting or complaining or wandering away. Even though we see that more work is needed for each child seeing this much improvement over just nine weeks is a good note to end on.

What does this documentary mean for ADHD Awareness? It’s a start to calm the waters between the overdiagnosing and overmedicating debate. It has offered information about ADHD in factual and unbiased ways. We’ve been given 3 hours’ worth of footage of everyday families trying their best to do the best for their children that require a different strategy of dealing with the challenging behaviour. These children have a different chemical make-up in their brains and won’t respond to the usual methods of parenting like most of their non-ADHD siblings can. We see glimpses of non-ADHD siblings as being calm and not exhibiting the same defiant behaviour which should make people realise that ADHD or ODD has nothing to do with poor parenting otherwise all the children in the family would show symptoms. It defies all logic to continue to blame the parents after witnessing that. We also witness the quick results in behaviour and learning after a combination of medication and behavioural strategies are used and the persistence of parents to implement those strategies in the absence of medication which took more time but eventually started to show some results.

ADHD Awareness in Australia is still in its infancy which seems a bit ridiculous because it’s been around a lot longer than Asperger’s syndrome and even removing Asperger’s from the DSM hasn’t made people forget about it. Most of this setback of awareness could be blamed on the media stigma that has somehow linked medication that helps these children with later on drug addiction that while is similar to speed at the same time turns children into zombies (because anyone on speed is a zombie, right?) and recent stigma that sees most children in schools as being shoved into a box and any child that exhibits the slightest difference is diagnosed and labelled and medicated into mediocrity. While I won’t deny it’s happening, it’s not the case for many families dealing with ADHD. As we have seen in the program children with ADHD are difficult to manage and the disorder left untreated affect education and social skills and as Prof. Mark Dadds says in the last episode will lead to these problems in adulthood which does include breaking the law and occupying our jails.

Kids On Speed? serves as the perfect building ground to kick off awareness more beneficial to those suffering with ADHD and raising a child with it. As was briefly mentioned in the last episode of KOS was that a well-known brain disorder is not receiving the kind of government funding it deserves that similar conditions like autism get. Instead, parents and individuals with ADHD must deal with the symptoms themselves.

And once better understanding is made of classic ADHD then we can move onto the non-hyperactive cousin of ADHD: the space cadets of the disorder. ADHD-Primarily Inattentive is still overlooked in children and though less obstructive in behaviour, the symptoms are similar yet manifested is different ways often leading to the same learning and social issues. The children are often introverted and low on energy. Their ability to focus is blinded in a fog rather than being unable to calm themselves down to focus. It’s like everything takes great effort as the child or adult affected moves through life in a half-awake state and this affects every area of their life. They are more prone to depression as those with hyper-impulsive issues are more prone to anxiety. The issue here is that ADHD-PI is almost never picked up in a person until adulthood and already they’ve got a lifetime of problems related to going through life without a diagnosis or even awareness of their symptoms which has a disastrous impact on their own self-esteem.

This October is ADHD Awareness Week and I usually write something for it. I’ve been going at it all wrong though; focusing on classic ADHD and ignoring the PI in my diagnosis because of my own hyper-impulsive issues related to more bipolar symptoms. But I have had 24 years of PI symptoms and the absence of hyperactivity and I think it’s an issue the public need to be more aware of. KOS was a very eye opening documentary even for those who know a lot about ADHD already but it’s focused on just classic ADHD and if we really do want to change people’s perspectives on ADHD then we should get our focus solely off those hyper-impulsive symptoms and begin to look at ADHD symptoms as a whole. We need to see ADHD as a brain difference that leads to many impairments that affects behaviour and is not simply a behaviour disorder.

Shanti Roy

Note: The author has suffered severe side effects from taking the stimulant medication Ritalin due to a trial of medication before diagnosis and lack of information about the small percentage of people who react negatively to stimulant medication; people with heart problems, a predisposition to mood regulation disorders and epilepsy. She does not blame the pharmaceutical industry for the harmful affects but accepts that the medication was wrong for her and is committed to changing how doctors diagnose and medicate ADHD by making sure they do a full family background check so no child or adult has to go through these life shattering side effects again.  

For more information and sample videos on the documentary KIDS ON SPEED? visit ABC’s website