The title of this blogpost is due to the fact that by posting it I know I will be opening one. I was going to call it Pandora's Box, but that term always reminds me of the line in Notting Hill, " I knew a girl at school called Pandora. Never got to see her box, though." Inappropriate but cracks me up every time. This being a serious subject I decided to go with the Worms.
My last post was about my session with Professor Tony Attwood and I said I would dedicate a post to my experience with medication. So this is it...
I think you all know by now I have two boys with Aspergers Syndrome. Before I had children I had some very idealistic visions of how parenthood would be and was also very sure of what type of parent I would be. Of course once I actually gave birth to my first child, those ideals were well and truly blown out of the water! I have also had to re-evaluate my opinion on many things. One of those things has been the much debated topic of medication. Or as one Mother so nicely put it " Drugging my child".
As I said I have two boys with Aspergers. The younger of the two was actually the first to be diagnosed. Because he had a lot of the classic ASD traits ( repetitive and restrictive behaviours, impairment of social skills and social communication and social imagination and many obvious sensory issues) it became obvious very early ( age 2) . I of course was not the one to notice these issues but as soon as Pierce began attending Daycare it was very apparent to his teachers that he was extremely different to his peers.
My older Aspie,Ryan was not so obvious. I knew from very early on that something was not quiet right but every time I mentioned it to my GP I was told he was " just a boy" . He also managed to go under the radar at Daycare. I worried constantly about his lack of friends and every time I saw him in the playground he was either alone or engaging in parallel play. Ryan actually managed to fake his way through the early childhood years at daycare much like a girl with Aspergers would. At home was another story. Ryan was mayhem with a capital M !
The day Pierce was diagnosed with an ASD ( it started with PDD-NOS and changed to Aspergers after his first review) was also the day of Ryans first parent/ teacher meeting at school. As you can imagine I was reeling from Pierces diagnosis and was a little fragile. I had two boys at school at this stage and had my eldest sons interview first. I walked away from it feeling pretty positive. My eldest boy. Shaun. is Neurotypical and every teachers, and parents,dream.. So I walked into Ryans interview feeling ok considering the days news. 10 minutes later I was in tears and total disbelief..After our initial hellos Ryan's teacher,, who is one of my favourite people,she has taught all my boys and is amazing,, said to me "We have some serious concerns about Ryans behaviour. At present he is not progressing at all and it is almost impossible for him to function in the classroom. Ha has been observed by the school psychologist and she feels he needs to be assessed." I handled this information really well and promptly burst into tears.
So now I fast track. And I should add, when I was at Pierces diagnostic appointment and our Paediatrician was giving me a run-down of ASD traits and behaviours I had these little alarm bells sounding in my head, They weren't ringing, they were saying : Ryan, Ryan, Ryan!"
So,off I went again on my many,, many appointments to Occupational Therapists, Speech Therapists and Psychologists and finally, with reports in hand, our Paediatrician,
By now you are probably wondering why this post is about medication? Well, Ryan has always had some very obvious ASD traits BUT we now know when Ryan is anxious and unregulated he likes to soothe himself with sensory input. He throws himself around.cannot sit still and is unable to concentrate. Of course all of these things say one thing..ADHD! So,throughout our diagnostic journey it was noted that Ryan displayed extreme hyperactivity which made it hard to further diagnose although all Therapists involved added he needed further observation for ASD.
Hence came the second hardest decision I have ever made in my life. Our Paediatrician diagnosed Ryan with ADHD/ODD with a note that he had many behaviours consistent with ASD but because his Hyperactivity was so prominent it was impossible to diagnose. We then had a long discussion (1.5 hours) about how to best help Ryan.
I am extremely lucky I have a Paediatrician who is very cautious with medication . We did how ever come to the conclusion that Ryan was unhappy, school was unhappy and I was unhappy. Something needed to change. He recommended Ritalin.I was heartbroken and devastated but also had to admit defeat. I consider myself a good Mum. I love my children and always put them first. I had run out of options with Ryan, no matter the effort I put in I was achieving nothing. I agreed to a trial of a very low dose.
We started the trial on a weekend. I was so paranoid about what this drug would do to my child I wanted him close. I explained to Ryan the tablet was to help him have a better day at school and not be so " jiggly" as he has always called his hyperactivity. He was more then willing to take the medication which told me he too was looking for help.Although he was willing he immediately gagged on his tablet.We then tried crushing it into icecream. again he gagged. By this time I was feeling like the worst mother ever and told Ryan to not worry he didn'tneed to take the tablet. He said it's ok Mum I can just swallow it with juice, and he did.
The next 4 hours were, for me.a revelation.The son I always knew I had and loved so dearly had finally made an appearence to the rest of the world. Unfortunately with this newfound calmness came the unveiling of Ryans ASD.Once his hyperactivity subsided the little issues I was always concerned with were painfully apparent. We then revisited all the above Therapists and back to our Paediatrician who immeciately diagnosed PDD_NOS which again has progressed to Aspergers Syndrome.
I wish this is where our journey with medication ended but it has not.. Ryan has progressed to a slow release Ritalin and he is on the highest dosage for his weight. We have never had any bad side effects,only positive outcomes. Unfortunately due to his late diagnosis and lack of support at age 7 Ryans behaviour reached crisis point. I had just accessed the Helping Children with Autism funding and had finally enlisted the help of specialists. Because my boys had excellent speech I decided to use our funding on a behavioural program run by a local Autism service. This program allowed an Autism specialised teacher to visit our home once a week and she addressed any issues we needed help with. She observed Ryan on many occasions and was extremely concerned with how unregulated he was. Ryan suffers from extreme anxiety. This anxiety causes him to overreact to situations and the way he dealt with this became very frightening. I was relieved to have someone available to explain my boys disorder and how it affects them.It was also fantastic to have someone help me set our home up with visual schedules and other behavioural aides, all of which made an enormous difference to our lives.
During the first school holiday break after Ryans diagnosis he had his first major breakdown. Luckily our behavioural worker was here on the day. As she said her presence was probably the catalyst for Ryans breakdown. School holidays are tough for our ASD kids, with the change in routine and then having a visitor on top of this was more then he could handle.
I had been having escalating issues with Ryans self harming and dangerous behaviour but on this day it reached crisis point and I could no longer ignore it. Ryan had been self harming for most of his life. starting at age one with head banging, usually on concrete or tiled floors. He then progressed to hitting himself in the head and biting his fingers and toes so severely he would end up with an infection. On this particular holiday break he progressed to lashing out at his siblings and me in particular. I had no idea how to calm him.So, the day of his Paed review we also had our behavioural therapist visit, Ryan was extremely anxious and behaving very aggressively. I informed our worker of his mood and she tried to calm him. He immediately decided to abscond and it took me almost an hour to get him back to our house. Less then 15 minutes later Ryan became upset because his brother touched one of his favourite toys. He became uncontrolable and repeatedly threw himself at our sliding glass door. I tried so hard to restrain him but he kept managing to break my hold and hurt me each time. I was so terrified of him breaking the glass and cutting himself It was honestly one of the worst days of my life.Once my beautiful boy calmed down he cried and kept saying I'm sorry mummy ,I'm sorry Mummy. So off we went to our Paediatricians appointment with Ryan rocking and chewing his fingers and not able to talk and me totally at a loss and a written description of what had just occurred. Again, I had an in depth and emotional discussion with our Paediatrician.He was very concerned with Ryans self harming behaviours and aggression and also his obsessive behaviours. We both agreed that these behaviours were anxiety driven. I was horrified when our Dr recommended Ryan start taking Risperdal. I had been to a Tony Attwood workshop where he voiced his concerns about Risperdal. He did not elaborate just said it's usage concerned him. After discussing my concerns and our Dr informing me of the pros and cons I agreed to a trial of Risperdal combined with Ritalin LA. I had gone from a person totally against medicating children to my son being on two very contoversial drugs. I felt like a total failure but I was also desperate to help my son.
Now for another flash forward. Ryan is still on Risperdal and Ritalin LA. We have been lucky enough to suffer no side effects. When discussing the use of Risperdal my Paediatrician told me he had found it helped with socialisation. I told him I thought he was crazy.. He wasn't.My sons self harming behaviours are almost non existent. He has many friends at school and his teachers have remarked how amazing the improvement in his socialisation is. Life with Ryan and for Ryan is still tough but I never question my decision to medicate. Anyone who knows him remarks on the positive changes. We are able to go out as a family. We recently went on a family holiday. None of this would have been possible before. Ryan is not a zombie. He is functioning and able to participate in many things he was never able to. We still have tough moments. He becomes agressive and reverts to his obsessive behaviours but never at the dangerous level he was at before. The thing I feared most (medication) has given back my son and given him a life and opportunities
he never would have had.
I understand the concerns with medication, I had them all, but please don't judge those of us who have made this tough decision. I have had people comment that I have medicated my son to make my life easier. NEVER. Even on meds Ryan is probably harder to care for then most children. I did it for him. He was unhappy and lost and misunderstood and noone,including Ryan could see the amazing boy I knew was in there.
I asked professor Attwood about his concerns with risperdal and he answered this,
Risperdal masks the problem it doesn't fix it. The child needs Cognitive Behaviour Therapy to learn to address their anxiety and aggression. His concern was parents giving their child this drug and not working on the underlying cause of their problems. He also said a child under 8 is not able to understand CBT. He said as long as we were working with a therapist and addressing his anxiety and aggression through CBT with the end result being Ryan not having to take Risperdal it was something he would agree with. I asked how long he would expect Ryan to be on Risperdal ( he is in CBT therapy) and he said it would probably take him two years to learn all he needs to. I honestly was hoping for 6months or less but was also glad to hear his concerns were not due to side effects.
So. My name is Teriann and my son is on medication. Please do not judge me for this or anyone else who has had to make the hard call. I do not do it to get a better nights sleep ( my son who does not sleep is unmedicated). I do it to make Ryans life better and the minute it stops achieving that he will not take it anymore.Please do not phone me and tell me when there is a current affairs show with an episode on the side effects of these drugs. I know them, my Dr knows them.
I did not make this desicion lightly,it is the best thing for my boy.I respect everyones right to their own opinion,please respect mine.
Above all, close that Can of Worms AND Pandora's Box.
Friday, 4 November 2011
This week I was lucky enough to spend three hours hearing Professor Tony Attwood speak. This is the third year running I have been able to do this and it is something I am extremely grateful for.
My local Early Intervention Service, who have been an invaluable help to me, have Professor Attwood visit every year. As my boys are both at school I do not use the Service officially any more but was lucky enough to again receive an invitation to this event.
I think most people who have a child or family member with Autism and in particular Aspergers syndrome know who Tony Attwood is. For those who don't or want to know more here is a link to his profile on his web page.
This year it was Tittled "A Conversation with Tony Attwood " and that is what is was. A small room with about 30 people attending. We were able to ask Professor Attwood questions that were specific to our children. Of course most answers were of interest to everyone.
For this blog post I thought I would share some of the questions, and of cause answers, with you all and also some of Professor Attwoods lovely insights into our amazing children. Remember this is my interpretation of Professor Attwoods opinions. I have no qualifications except that of a parent...
Sleep problems are something most children with ASD have in common. Apparently there are a few reasons for this.
A normal; person has four sleep stages. The first three are Non REM sleep the fourth is REM sleep - The deep sleep stage where dreams occur. Some people with ASD are unable to achieve REM sleep, some have seizures while they are sleeping and for alot they do not know how to go BACK to sleep! I have one of those... If his eyes open he is UP and ready to party!
Even more common in ASD people is trouble just getting to sleep. Apparently for Neurotypical people it takes about 20 minutes to get to sleep. For a person with ASD this can be anywhere from 45 minutes up. My six year old takes 2 hours!
Then there are sensory issues...Is the room too bright (over stimulating), too dark, too hot, too cold. Are the sheets itching? Are their pyjamas too tight?
How to fix it is a more complicated matter. What I learnt on the day is...
Melatonin will help reset a body clock in SOME children. It is a natural substance but Professor Attwood believes it should only be used for a short amount of time. It should take 3-4 days to reset the body clock. Once the clock is reset he recommended ceasing use after day 7. If it hasn't worked by then it won't. He also said that although it is a naturally occurring substance there are no studies on long term use.
Professor Attwood also recommended a sleep clinic for those children that have chronic sleep problems. I was always under the impression that children with ASD did not need as much sleep as a Neurotypical child. NOT TRUE! They do and when they don't this can contribute to behaviour problems. He said to "fix"these chronic sleep problems you need a report from a sleep clinic so you know HOW your child is sleeping and where the problems are. This is only for chronic sleep problems. Just wanting another hour or two does not qualify and Professor Attwood did not even recommend Melatonin for these minor issues.
In order to cope with the anxieties and stresses about the chaotic world around them, kids often obsess and ritualize their behaviors to comfort themselves. While some kids may spend their time intensely studying one area, others may be compulsive about cleaning, lining up items or even doing things which put them or others in danger. Not adhering to these rituals can be traumatic and often impossible for them. Professor Attwood explained how most of these rituals start...
There is a book called The Curious Incident of the Dog in The Nighttime. The main character is a 15 year old boy with Aspergers. This is an excerpt from the book..
3 red cars in a row mean that it is going to be a Quite Good Day. 4 red cars mean that it is going to be a Good Day. 5 red cars mean that it is going to be a Super Good Day. And 4 yellow cars in a row mean that it is going to be a Black Day, which is a day when I don't speak to anyone and don't eat my lunch and Take No Risks, because yellow is the colour of custard and double yellow lines and Yellow Fever which is a deadly disease.
Now you can see why he hates yellow so much but why are red cars good? People with ASD crave control, they like to know whats coming and HATE unpredictability. Maybe one day the boy had a really good day at school. What made this day so good? He was unable to attribute it to anything abstract and may have remembered seeing five red cars that morning. BOOM! Five red cars means a really good day.
Of course this makes absolutely no sense to the rest of us but perfect sense to the boy with Aspergers.
One of the Mums asked about her sons obsession with Super Heroes and in particular taking on their persona. This was becoming a problem as he was demanding to dress in character most of the time. Melting Down if denied access to his costumes and even refusing to attend his Early Intervention class until he was dressed in one of their costumes
I have a similar issue with my 6 year old. His obsession was Police clothes for almost three years and is now Army clothes.
Professor Attwood explained it like this. Super Heroes are cool. They have good values they are respected and no one ever makes fun of them. ( I guess this goes for police men and Soldiers too)Why wouldn't you want to be one. For some of our kids being THEMSELVES is simply too hard So they use these persona's to quell their anxiety about being accepted. It can be a good thing and a way to help them socialise but when it becomes an obsession and totally controls them and you, it's time to intervene.
Aspergers and Girls
This was one of my questions and is of particular interest to me at the moment. I have two boys with Aspergers Syndrome and one without. I also have aa almost four year old daughter who is an absolute delight. I had a few concerns early on when she first started moving around, she liked to line up DVDs and her dolls. This of course freaked me out. It stopped and I relaxed.
In January this year she started preschool. From January to September she did not speak a word to ANYONE at school. The only time she spoke was when I was present and only to me. She also displayed this behaviour in her early years when being cared for briefly in the Early Intervention Daycare room, while I attended workshops etc. At that time we put it down to age and shyness. There are also certain family members and friends she does not speak to.
I have been very concerned about this and after explaining all this to Professor Attwood asked How likely is it that Darcy also has Aspergers?
He explained that girls are extremely difficult to diagnose and present very differently to Aspie boys. Girls are fabulous fakers. They watch and learn. They practice what they have learnt,ie with their dolls, and they mimic. They have fabulous imaginations and often live in a land of make believe. When they play with toys they are often acting out what they have learnt. They know they are different but will do everything they can to not let any one see it. They are usually compliant in early childhood settings, not wanting to draw attention to themselves. They are often intelligent and excel at school but friendships are hard. they usually have one very good friend.
Selective or Elective Mutism is a very common trait in young Aspie girls as it is a way to deal with their extreme anxiety. They will not say I don't want to go to school, They will say they are ok because they think that is what they are supposed to say.
As to my question of how worried I should be? Apart from holding my breath during the above description, the chances are dependant on other things.. She has two older brothers who have Aspergers, this means she has a higher likelihood of also having it. That decreases a little bit because she is a girl.If she was a boy it would be virtually a given she would be Aspie. Because I am an older Mum (36 when she was born) it is more likely she will be. Because my Husband was also older it is even more likely...Not looking good.
Professor Attwood then told me that a diagnosis may not be possible as it may not even be apparent she has Aspergers until late Primary School, Early High school. This is danger time for Aspie girls. Socialising becomes more difficult and they can have breakdowns unable to keep their facade going any longer. You then have all the lovely problems of puberty and predatory males to deal with.
His advice, get her assessed. Start addressing the Anxiety and watch very closely.
I will now be scouring Amazon for a copy of Professor Attwoods book on Aspergers and Girls.
I also asked a question about medication and in particular the medication my son takes but that is another story and as I know a few people struggling with this topic at the moment will devote a blog post solely to mine and my sons experience and Professor Attwoods advice.
I hope some of what I have shared is helpful. I think most of what I have covered and more is in Professor Attwoods book The Complete Guide to Aspergers Syndrome. I have his first book which is brilliant and apparently this one is even better.
For all of you with a child on the Spectrum I wish you luck on your individual journeys and leave you with my favourite Tony Attwood quote:
“The trouble is, people will say
‘people who suffer
from Aspergers’. No, you don’t suffer from
Aspergers, you suffer from other people!”