Living With/Raising a son with Aspergers.
- By Kazza K
My son, D, is an aspie. If you're reading this and you know what an aspie is, then chances are you've got your very own aspie. If not, then it's an affectionate term we use for someone with Aspergers Syndrome, which is part of the Autism Spectrum of Disorders; mind you if the DSM V has anything to say about it, everything will be lumped under Autism, but I'll leave that one alone. So, I'm part of the aspie club that many other parents belong to worldwide. You know with all the years I had as a therapist behind me I didn't recognise my son had Aspergers until we got to critical mass when he was in his teens. I guess I was too close to him to really put 2 + 2 together. I just thought D was special, interesting, eccentric, quirky, and marched to the beat of his own drum. In our family that isn't something new, and it's certainly not an insult, we value it. We rather love the unusual, we're drawn to it, and 'it' to us. My husband is definitely an aspie now that I look clearly at it. So how was I to know? I married a wonderfully unique, certainly intense, and unbelievably intelligent man. If I love my husband so much how could D and his ways be unusual or an issue?
So what does being an aspie mean? What is it like as a parent? Well, this is my stripped down version, my experience with my son that I'm reflecting on, it's not meant to be a guide or gospel or even right, for want of a better word. I'm primarily speaking as a parent here, and my experiences are not everyone else's. One thing that I do know is that the Autism Spectrum of Disorders is vast and there are many behaviours that come under its umbrella. I want to state for the record that D is classified as high functioning Aspergers.
Some behaviours that I can say were very noticeable for us were -
D would never say hello or goodbye to anyone. He just didn't seem to notice people or get the relevance of greetings or farewells. We would constantly say "D, say hello" or "D, say goodbye, wave" or "D, such and such just said something to you, answer them back." This went on every day until he was in his mid-teens. By then he had become used to our rote instructions on social etiquette, it became easier for him. Once again we did not know until mid teens that D was an aspie we just got him to be involved or engaged in what we considered to be common courtesies.
D would be very happy to be on his own. That didn't mean he didn't hang out with people. He had a group that he would associate with at school, but he always had one person he felt most comfortable with and that was who he would be around. This happened through pre-school, kindergarten and primary school, in particular. He also found girls to be a gentler or quieter species (if he picked well, and he did), he handled those qualities better. After school, though, he preferred to just be at home with us and unwind.
D found school stressful. As he grew older he told us that he couldn't cope with the social expectations of teachers and his peers; looking at people's faces, trying to read what they were saying or they meant. He also felt bored in the classroom and that he wasn't pushed enough, yet paradoxically, he couldn't cope with the pressures that could be placed up on him to achieve, achieve, achieve. School is a minefield for aspies - trying to fit into groups, find sympathetic friends, deal with teachers and frustrations.....and the bullies, who love to spot a weakness and go in for the kill. In high school if they changed the room an exam was in it became panic stations. One day D arrived home unexpectedly in a 'state' because they changed a time and room on him for a major exam.
D could never handle raised voices, this is definitely in line with being overwhelmed, or hyper sensitive to noise. However, interestingly, in D's case, pots and pans banging around him in the kitchen sink didn't bother him, he could go to sleep with that particular noise soothing him, but human voices really did affect him. When he was a baby if you raised your voice an octave he would cry, and he was the most placid baby - he just ate and slept. To this day he's not good around the raised voices of conflict, better now, but definitely not good with it. Conflict is hard to decipher for an aspie, the conflict can be important for the people involved in it, they're resolving something, but for the aspie it's confusing, as it just seems hard to decipher or it seems angry. It can be hard to see any clear delineation between conflict resolution and confrontation for an aspie.
From toddler until now D never stopped moving. People would say to me - D "must have ADD, he never slows down" or "how can you handle him, he's so full of beans." I never thought about it, we all just did what we did and accepted who he was. He could never sit through a movie, still struggles. (Although, movies in a theatre can give him sensory overload). Once people drew my attention to his ants-in-the-pants routine, I guess I did see what they meant about his activity level, but, whatever. We always thought he would be a tap dancer as he used to do this incredible tapping movement across the floor of the dining room diagonally over and over and over. He does tap now:))
D is stubborn and would also attempt to wear you down if there was something he wanted. I don't just mean a day or two I mean months and months of persistently letting you know how important something was. He has never been a materialistic person, it was not about that; but if something got his attention, something that was a passion, he would be like a dog at a bone. We would all hang tough because to crack was not always an appropriate thing to do. More on this further down in obsession.
D has tics. When he was young if he became excited or overwhelmed by something he would grab his penis. Oh lord did this freak his kindergarten teacher out. She told me in no uncertain terms that this was "wrong" and he "needed help." Eventually, after another 'talking to', which I might add was condescending, I simply replied "I am the help, and I say he's fine." She grudgingly left me alone after that. He grew out of this one in his own time - at least he wasn't grabbing, bullying, biting or punching some other child.
D also blinks, another tic. He can't handle looking people in the eye, and if forced to for any length of time the blinks set in, if he's tired, the blinks set in, if he's stressed, the blinks set in - you get my drift. He used to get the flappies too, the hand movements, over gesticulation, and general hand-flap movements going on that a lot of aspies get, particularly when overwhelmed or over stimulated.The flappies just seemed to stop for D at, roughly, around 10. D understands the blinks, well, he knows they happen and he can minimise them more now that he is older. He can also maintain eye contact a bit longer and he has ways of looking beyond the person he's talking to in a way that doesn't say "I'm ignoring you", it's still not perfect, but it's pretty good.
D can hear things the wrong way. It's because of an aspies tendency towards being literal. D can hear things without the sarcasm or tongue-in-cheek humour that may have been there. In fact sarcasm is not an aspies friend. Because facial expressions are hard to read for aspies, what people mean and what aspies hear are often not one and the same. D felt people were having a go at him, he was overly sensitive, he had trouble distinguishing between dry humour and someone being mean. I remember D would come home from school and be quite upset or concerned over something someone said, when he told me I had to give him my interpretation of what was meant, and explain why that was the case. Obviously, not being there I could not always tell 100%. Sometimes he got it right, someone was simply being an arsehole. Talking to him about it helped a lot. Eventually he recongised sarcasm and dry humour more and more. Interacting with people got better and more understandable for him.
D always needed to be told to do the simplest of things over and over. "D, close the front door", because that never happens unless he is told, "D, don't lock the top lock on the door," not everyone has a key to that one, "D, close the sliding door, D, get in the car, it's open, D, close the fridge door." These sound funny, I think, as I write them, or if I explain them to others, but it's something that can sometimes get frustrating for a parent when having to say them over and over. Particularly given we all tend to have busy lives and other children to look after, and some days are just shitty, and we're not feeling shiny ourselves. Try to be patient it's better than losing it, this serves no-one any purpose other than stressing your child out and making you feel bad for having lost it. Trust me I know, I've lost it a few times and felt lousy.
D could be both young and old all at once. He can speak like the most educated, oldest soul on the planet, but he was always very young socially. Nickelodeon was a staple for D when other kids were watching grown up movies and adult television. We still watch Spongebob and re-runs of Angry Beavers and Hey Arnold, but we also watch World Movies together and discuss them in great detail these days. He has matured and caught up with his peers now in most ways.
Obsession with something is a big one for many aspies - a person, dates, objects, sports, trains, planes, cars, rocks, flags, places - the list goes on, anything can become an aspies intense 'passion.' For D it was gymnastics. I loved gymnastics, and when he was about 5 I showed him a competition on TV. He. Was. Hooked. Everything became gymnastics. In the end I signed him up with a local club. Our house became littered with videos of every possible gymnastics competition that was shown on cable TV, he would know when they were going to be on, would watch, and we would record, come hell or high water. Our furniture became pommel horses, vaults, uneven bars, floor mats and so forth - it's no good fighting it, you just learn to go with the flow for the sake of peace. Besides, who cares, if it's so important to one person and not so much to another, you go with the greater need. As a positive, I'm proud to add, D ended up a multi regional champion, on every single apparatus, as well as a state champion.
Anxiety and depression. For me this was the catalyst for assistance and a diagnosis. D had a definite aura of seriousness and melancholy around him his whole life. From around 10 it started developing into something more insidious. First of all he started obsessing about death, which eventually led into worrying that sleeping would mean never waking up, so he stopped sleeping for a while. He also became obsessed that food contained salmonella, that it was poisoned, then eating became a huge issue. By the time he was 14 he was underweight and growing at the rate of knots (he's 6'1'). He attended school on a part-time basis, not officially, so it caused problems, there's a lot more to this story that I may visit on another occasion.
I want to add something here by *Nicole Rinehart, Associate Professor of Psychology, Monash University, that I felt was incredibly apt -*Categorising Asperger’s disorder as a milder type of autism is problematic because it implies that life is less challenging for a child with Asperger’s disorder compared to a child with autism. But in some cases, young people with Asperger’s can suffer from more severe anxiety and depression than their peers who have been diagnosed with autism – and there is nothing mild about clinical anxiety and depression.
This rang incredibly true for D. D went through the most horrendous depression and anxiety, which truly kicked in at puberty and reached a terrible zenith around 14-16. It was a dark period in all our lives as we watched him deteriorate to the point where he wouldn't eat, without much cajoling from myself, my husband and my daughter, he struggled going to school, thought no-one liked him, was being bullied quite a bit and, I might add, some of the teachers actually allowed this to happen in their class. By now me, my husband and our daughter were doing shifts with D, to make sure he didn't self harm and he ate. Just so you know, this is a very stripped down version of events, it was terribly draining, emotional, and it took a toll. If I go back and look at the journal I kept during this period I cry, and the people that know me know I'm not one to shed a tear easily.
Anyway, we took him to a 'highly qualified' therapist, who proved less than useless, and only angered him. Aspies often suffer a great deal of frustration at times; because feeling the emotions and getting the emotions out don't meet up too well. Throwing things, getting angry quickly and all of the associated issues frustration brings out in the best of us happen more intensely to an aspie. Eventually it was my daughter who found a brilliant adolescent psychiatrist who listened, read my journal that I had meticulously kept about mood and behaviour, and acted accordingly. He medicated D correctly, talked to him and helped him get on his feet. D is on a powerful anti-depressant and will be for life but, boy, what a difference a drug makes, phew. It turned his moods around, he slept, started eating and actually gained 20, much needed, kilos. We now had a diagnosis as well which the school had to accept. The biggest kicker? The school Prinicpal didn't believe that D had Aspergers because he was "too bright", can you believe this? I'm sure some of you have experienced this as well. Just so I'm clear there is no magic pill for Aspergers, however for the aspies that suffer acute depression/anxiety there are anti-depressants available. Obviously this is a personal choice, for D it was what was needed, but I'm not advocating it for everyone.
Can I say, from a professional standpoint as well as just being a mum, keeping a journal if your child is suffering depression, anxiety/panic is a must do. I like to see people's words when they come to see me for a multitude of reasons, for depression it can be invaluable. If your child is an aspie and anxiety and/or depression is part of their life, please be vigilant, see the right professional, don't always believe the more (paper) qualified the better, look for experience they have in the area you're needing help for your child in. Experience can never be beaten.
D is a dancer, a very nice dancer I might add. However, during the dark period he had to stop because he couldn't function, and dance was out of the question. However, post dark period he got up on stage and performed so well, at times he was quite overwhelmed before dancing, but we talked it through and he always went out there and nailed it, so amazing, so proud. Getting back to having to tell D the 'simplest things' - when there were eisteddfods, concerts, or photos he would put the wrong socks on - black with white pants, white with black pants, or he would put the wrong shoe on the wrong foot, you have to laugh sometimes. So either I or my daughter made sure we stepped up and "organised" him. A number of people at the studio think I baby him, because he's been so tall for so long, but too bad, I'm not explaining myself or D. There are those who know and understand. The dance studio's owner's son is an aspie, so she gets it.
As a parent I would have to say that an aspie learns much from parroting. Constantly and calmly going over how to do something, the why of it, if they are up for that, some better ways of understanding meanings behind other people's words can be both comforting and reassuring. Most importantly it's educational. Everything is dependent on the level of Aspergers, but just socialising them reassuringly, going over everyday phrases, activities and expectations of behaviours all help.
The reason for this blog is to just write my experiences down, to let others now they are not alone, to make someone aware of something they may not have previously been aware of, to give light at the end of the tunnel. it's not meant as expert advice, I don't work in this area ordinarily. As D matured some problems became more intense, others died down or went away and whatever was an issue we worked as a family to deal with and improve. Family means a lot and together you can be a great team.
So, I want to end on a positive. D is now 19, he is happy, healthy and studying at university. He has also recently starred in a play, which was amazing, and he student teaches ballet. He knows to say hello and goodbye, he talks to people, he is quite popular, and the girls all love him, he's a very nice looking young man, quite often the case with aspies, but he's gay, so....sorry girls. Another blog on that one, D has had plenty in his young life worth blogging about. On a couple of occasions he has helped me out in my practice letting other children know things get better if they're being bullied. D now has a nice partner, who is good for him, and he has friends that know he uses big words, can appear arrogant, but isn't, and he can sometimes be a little intense, but he has the most amazing sense of humour and makes me laugh. D is one of the nicest people on the face of the earth, this is not just a mother speaking. So many children at the dance studio he student teaches at love D. He has built amazing empathy skills, and continues to work on these, something aspies are not supposed to be good at. He is working towards a career where he can help others and I think he can do it, he'll be great at it.
Our nuclear family is tight, my husband, my daughter and I have all put a lot of effort into socialising D and making him feel confident, understanding that his place in this world can be fabulous, and that he can do anything he wants; even if it seems daunting. He still has moments of anxiety and he still doesn't shut the front door without being told to do so, but he's sitting on a high distinction average across all university subjects in a hard course...ah, the complexities of Aspergers.
My boy who started out not saying hello or goodbye, grabbing his penis, endured rubbish from some nasty peers and poor teachers, ending up in a full blown depression and anxiety-driven melt-down, has turned much around. It's not perfect, but much, much better than it was. I implore parents out there to hang in there if things are tough now. If you have read this and think your child may have Aspergers, get them diagnosed. It isn't a label, it is a diagnosis for assistance. Go to someone who knows this field and will give you the correct diagnosis, a plan of action, and hold your hand a little too, because no matter how much you love your children, sometimes it is overwhelming. Having a diagnosis should help you with your school, some pay lipservice to it, but others have help in place; utilise it if it's available. University recognises it through Disability Service here in Australia and they are great advocates for the student with Aspergers. I know there are parents out there coping with much more difficult Autism Spectrum of Disorders children and I'm thinking of you. I take my hat off to you and your child and hope that you have the love and support you need. I would not change a thing I've been through, D would not be who he is now without his Aspergers, but others have a more difficult time, it's all relative. Don't feel bad if it feels hard sometimes, find the silver lining, ask for and look for support, reach out.
Before I finish, I want to send a special shout out to my daughter, A. There is a bit of an age gap between my two children, it's not huge, but A has been like a second mum to D; and they love each other. A was instrumental in finding the psychiatrist for D, and she spent many a night with me holding D's hand during trying circumstances, she is an amazing sister, daughter and person. Love you A.