My son Ruben was diagnosed with Aspergers Syndrome at the age of 4. Having a child with Aspergers is at first, quite perturbing. I guess any clinical diagnosis is. This is my tale as the father of an “aspie”. Maybe it helps someone out there.
Diagnosis didn’t come easy. Especially when he was young. When Ruben was 2 years old, we realized that his language abilities were simply not coming along the way we expected it to be. When he entered his first kinder-garten type school at 2½ years of age he really did not say much more than the basic “i want”, “mine”, “hallo” and a few other two-word sentences.
However, typical “aspergers obsession” was already apparent. He could say the word “fan” in six different ways and was completely obsessed with fans. I spent more time shopping for fans, and building fans out of old electrical DC motors and battery packs than anything else. When visiting at friends, he would instantly get attracted to the biggest baddest sharepest-blade fan in the place and pretty much play with it for the entire visit. You couldn’t remove him from it with a pickaxe if you tried.
My wife (a qualified Montessori teacher) was already worried, knowing which developmental milestones and sensitive periods was age appropriate for him. He pretty much missed all of them, except for mathematical interests.
Initially we thought it was simply slow language development. After 18 months in a local Montessori school with no real progress in his language development, we approached the proffessionals. Test, after test, consultation after consultation with everything from speech therapists to occupational therapists ensued. We were told that he has low muscle-tone, poor fine-motor skills, and that his speech is underdeveloped.
Well, we knew that.
Eventually, after consultation and interviews at the WITS Centre for Language and Hearing Impaired Children we were referred to a developmental psychologist who made the diagnosis.
The Centre for Language and Hearing Impaired Children offers specialised treatment for kids with language and hearing problems, and they had treated many Aspergers children before. We enrolled Ruben, and he was introduced into a rigorous regime of speech, occupational and phsyio therapy. Because all the therapy happened at the Centre to him – it was just another day at school.
We were also advised at this point by the Centre, to switch our home language from Afrikaans to English, as a single language would be the best for him to grasp.
We could immediately see improvements, his language abilities improved drastically, and he became more agile.
However – after nearly 18 months of treatment at the Centre, the teachers and therapists started to recommend that we medicate Ruben to deal with his “attention deficit” issues. We tried Rispadol for a few weeks based on a perscription by a specialist. What a disaster… Ruben regressed, became whiny, sleepy and moody all within the space of 10 minutes.
I feel that teachers grab to easily at the “medicate for attention issues” straw, because it makes children more manageable. The pressure at the centre to medicate continued, and eventually I blew my lid and decided to remove him completely. The Centre does marvellous work, but their bedside manner requires a lot of work. The Centre was also an extremely noisy and busy environment which doesn’t help a child with Auditory Sensitivity.
Educating an Aspergers child
Manageability of an Aspergers child is actually very easy, as we found out. Simply keep them involved in their interests, and if the subject at hand is not their interest, try to combine it with their interests. For example, Ruben hates drawing, cutting and coloring in pictures. Give him pictures of fans or computers to cut and color and he’s there like a bear. Mission accomplished. Montessori directresses call this technique “directing” and practically it does work.
The problem is, to find a place where your Aspie will have this kind of attention and care. Beware of teachers and therapists recommending Ritalin, Rispadol or any other kind of medication. The simple fact is that Aspergers is a genetic syndrome that cannot be “medicated” away. I don’t doubt that medication may help under certain circumstances, but simply medicating to make “managing” your child easier and to “sort out attention deficit” is utter madness.
Finding the right environment
After “The Centre” we found a Montessori school called “New Beginnings” where the headmistress was a proponent of “Integrated Learning Therapy”. The school was apparently capable of catering for children with special needs, and she gave us an ILT lecture and (yet another) assessment on the spot. The headmistress turned out to be a complete psychopath, and Rubenand us endured 6 months of agony. All I can say is that this woman was utterly insane.
We had Ruben re-assessed again, because by this time we were confident that he might be able to join a mainstream school. “Viv” was simply an angel. By this time (6 years of age) Ruben was testing average on most things, and advanced in maths and reading. His social skills, however have and probably will always be lacking, and his sensitivity towards busy and noisy environments had not yet diminished.
The Studio of Learning
These two women should actually have wings. They are complete angels. The Studio is a small bridging environment where a maximum of 6 children per class are enrolled. Claire and Ria are competent, confident and gentle with the kids. Ruben is flourishing at the studio and has now started his second year, doing Grade 1 at the age of 7. Socializing is still sometimes problematic, but he gets along well with most children and has made a number of friends.
So, what are the tips?
I am certainly not a qualified expert, but I can relay some of the things that I’ve found to be important after having gone through 7 years of Aspie-dom.
- Don’t panic - One in 50 people have a chance being diagnosed with some form of Autism, of which Aspergers is a borderline/spectrum syndrome.
- Get a diagnosis - It’s not always possible, but try to get a diagnosis as soon as possible, then READ up all about Aspergers, and Autism. Get yourself the tools and knowledge to move forward.
- Avoid denial - No diagnosis is 100% accurate, but even if it isn’t, acknowledge the fact that it is very likely. That simply makes the journey simpler, and removes all the internal conflict. If people ask, tell them, confidently. Theres nothing to be ashamed of.
- Don’t blame yourself - I am probably an undiagnosed Aspie myself, but trying to figure out if it was the innoculations, the test-tube incubation or simply the genetics that caused the syndrome simply gets you nowhere.
- Don’t over-therapise - My experience showed that aside from speech therapy, none of the other therapies were really all that successful. Aspergers kids develop slowly in many areas. A lot of the developmental milestones DO come, but only with age.
- Speech therapy is important - it helps your child to understand some of the nuances of socializing, and not to always interpret speech “literally”. This is probably the best therapy you can sign up for.
- Don’t sign up for and try every “new therapy”, like ILT that comes your way. You are largely going to be wasting your money. A nice cottage industry has sprung up to “assist” the parents of Aspie’s and other special needs children. Take care of the basics, get a good developmental psychologist and follow their advice.
- Don’t fight the obsessions. Work with your child and use the obesssions to your advantage. Convince teachers to do the same. Trying to control, or stop the obessive behaviour is simply going to frustrate you and your child.
- Find the right school. Aspies don’t cope well in enviroments where they are bullied due to their personalities, or that are noisy and frightening. A small school, with a low teacher to child ratio is the best. Make sure that the teachers are willing to give it a go, and give them as much information as possible.
- Don’t overprotect. Aspie’s don’t socialize and generally aren’t as physically robust as their regular peers. However, don’t deny or protect them from interaction with “regular” kids as this will only leave you with a child that simply cannot cope in the real world.
- Teach coping skills. Growing up with Aspergers is about coping with life on the “wrong planet”. Equip your child with as many skills as possible to understand the world. Don’t try to change your child, that is just physically impossible. Teach them how to survive.
- Make friends. Aspergers children talk differently, have different interests, and will have difficulty in making friends. Again, use the obsessions to your advantage and take the effort invite school friends over. Make your home an attractive place for potential friends (think xbox, trampoline, computer, play areas, cool trips). The friendships eventually get going, even if it is simply because your child is the “expert in his field”, or because his friends like coming to your house.
- Follow a healthy diet. Stay away from anything with preservatives in it (yes these days that even includes dried fruit), avoid high-sugar items and give only pure fruit juices or water to drink. Macdonalds is out, except as a treat. Fresh fruit, proper cereals, bread, cold meats and unprocessed meats and oat cookies.
- Praise and Support. Tell your child that he is the most intelligent, clever, awesome person in the world. In fact parents of all children should do this. Make sure that he knows that you will be there for them no matter what.
- Explain social behaviour: Take the time and effort to explain “sayings”, phrases and social conduct in detail. Aspies learn emotional language, and social behaviour almost academically. In situations that cannot easily be explained, simply state that that the correct behaviour is “the rule”.
It will most likely be accepted and memorized as “the rule”, and perhaps once their understanding has deepened be properly understood.
- Be Happy – Take pride in the fact that your kid is probably a geek. Your child is unique, and very different from others. Nothing will ever be “normal” and that’s great. After all, normal is just a setting on the tumble drier.
Ruben is 7 years old now, and coping very well. He’s made a number of friends, plays wildly and is an extremely happy, and caring child. His school work is on standard (even though he still hates drawing and coloring in) and his maths and writing skills are excellent.
His obsessions have moved on from fans, to alarm systems, to passwords and security codes on his computer, to his laptop, to security cameras, handheld cameras, to electrical experiments and any other gadget that might hold interest.
Actually, he sounds a lot like I was at that age…
I wish other parents of “little professors” the best in their journey.