"Congratulations! Your child has Aspergers!"
I'll often say this to parents and the blank/astonished looks that I receive make it clear that they just can't see the good in the label.
There are many worse conditions that your child can have. People with aspergers can have rich and fulfilling lives. They can get married, they can become successful business people and they can have loving and supporting families.
The main keys to the condition are;
- Early Intervention
- Supportive and Understanding Parents, friends and partners
There's a lot more to early intervention than just detection. In fact, if you're going to stick with detection only, then you might as well, not bother getting a diagnosis.
For a start, there's information dissemination. You can't keep the diagnosis to yourself. You're going to have to tell people. A lot of parents balk at this on the grounds that they feel their child will be victimized by the system, by their teachers or by their peers. If anything, the opposite is true. If your child behaves "out of the ordinary" and no satisfactory reasons for their behavior are given, then there is no defense from the actions of their school (for example being expelled for taking something literally) and no special accommodations are made. Similarly, children without a known condition will find themselves with less teacher protection from bullies.
The absolute best therapy of all is "early intervention" and this means that you really need to make the diagnosis known. You'll be surprised how often teachers guess the problems before you tell them and how often they reveal themselves to be experienced in special needs and aspergers.
You should find out if your child's teachers know about aspergers and if they've taught children with aspergers before. If not, it's a good idea to print off some material for them to read. If your child has different teachers every year, then you should consider giving them an introductory letter each year. A letter which points out not only information about aspergers but also information about your child's particular likes and dislikes, strengths and weaknesses.
Once the teachers are aware of the diagnosis, they'll probably engage you in the IEP process. IEP stands for Individualized Education Program. The IEP is a legally supported method of customising your child's classroom activities to address their particular weaknesses. It needs to be taken very seriously and both parents need to attend IEP meetings. You need to be prepared and you need to be focussed on moving your child forward rather than complaining about past mistakes the school may have made.
You'll find some useful IEP information on this blog; Click on Series Articles and look for "The Individualized Education Plan (IEP) for School Children with Aspergers".
The IEP is nothing to be scared of and it's instrumental in getting your child the right support. Don't let the school take the lead in the IEP because they usually have a lot of special needs children and what works for one child doesn't necessarily work for another. Keep the IEP meeting strongly focussed on your child - put the I back into IEP.
As well as the IEP, you'll probably want to get your child into various other forms of therapy such as speech therapy and occupational therapy. Be careful about engaging too many forms of therapy at once because your child can be overwhelmed and all of them produce a degree of "homework". It becomes quite expensive too.
Even if your child has well developed speech, speech therapy is a good starting place for getting rid of that characteristic "robotic tone" that aspies are famous for. You can use speech therapy to get your child to develop a richer and more emotional voice. Acting lessons are a good substitute for speech therapy in older children.
Occupational therapy is a must for children with aspergers. Children with aspergers often suffer from "low muscle tone". This doesn't mean that they can't develop muscles - and even if they become very muscular adults, it doesn't disappear as a condition. Low muscle tone manifests in a number of different ways many of which result in greater flexibility but less control over limbs and other moving parts.
It's common for exercises in balance and co-ordination to be big part of occupational therapy for aspies. You'll see these sorts of exercises as; swinging, climbing monkey-bars, skipping with rope, balancing on a rope bridge and catching and kicking a ball. In fact, taking your child to the park regularly will go a long way towards satisfying their occupational therapy needs.
Low muscle tone isn't restricted to limbs however and your child may demonstrate low muscle tone in the most bizarre places. The muscles of eye for instance may make it difficult for them to focus on the blackboard for long periods of time or to switch between the far and near focus of blackboard and paper. It may be very difficult for them to copy anything from the board. Your occupational therapist may request "following a pencil" exercises to correct this.
Then there is the problem of pencil grip. Low muscle tone can cause severe aches in the hand and you may find that your child is quite reluctant to write. Low muscle tone can manifest later in life as overuse injuries, so the more work you can do in this area, the better.
Being Supportive and Understanding
I know that I "harped on" quite a bit about acceptance in my last post. It's because it's such a significant problem. I've talked a bit about support already, covering topics like advocacy and support services but sometimes it's easier to understand what's needed by looking at the negatives - what not to do.
One of the first things that parents do when they "accept" that their child is different is lash out angrily. It's ok to be angry. It's hard to watch all of those plans you made in your pre-parenthood days collapse into reality. You may feel victimized but you'd be surprised how different things will be one day. One day you'll realize that those plans you made were never realistic and that your child's label had nothing to do with their collapse.
In the coming days, you'll find plenty of things to feel angry about. One of the worst of these is other parents with "perfect children" who simply can't understand your situation. If you're in a mother's group like this, then get out now! Find some parents with similar issues to your own. There are plenty of aspergers support groups around both online and in real locations.
You need to find parents who have accepted their children's diagnosis and who aren't afraid to talk about how things really are. You'll also find that although the grass always seems greener on the other side, it quite often isn't. Those parents with perfect children either have other issues or simply don't discuss their problems openly.
The blame game can also be quite harmful. It's one thing to identify which parent or which family line the aspergers comes from (because it is a genetic condition) but it's not ok to lay blame. Nobody is responsible for your child's condition and getting into blame or "if only..." territory doesn't help anyone. Of course, if you manage to identify the source, you may well find some family "heroes" who can help your child in matters of self-esteem and understanding.
Then there's the knee-jerk reaction of "curing". There is no cure. You'll find all kinds of information on the internet about miracle cures but none of them work and some, such as chelation and stem-cell therapy are downright dangerous.
That's not to suggest that you shouldn't try anything. There's evidence both in favor of, and against dietary changes, such as the gluten and casein free diets (see: http://www.autism-help.org/intervention-casein-gluten-free.htm). If a "safe" behavior modifier brings results, then use it. Just don't expect a cure.
Medications will also be offered along the way. Obviously nobody is keen to try out medications on their children but even so, caution is advised. Medications tend to have both positive and negative effects and a doctor's recommendation should not be relied upon as sufficient reason for you to put your child on a medication program. You need to be informed. You need to research the medication and learn its side-effects and you need to feel confident that you'll be able to spot the negatives if and when they arise.
The internet is a great place to start for information about medication because there's a lot of forums where people discuss the various effects and the wikipedia pages for various drugs are very informative. You need to be aware of the various biases out there. Some people and some organisations (such as the Church of Scientology) tend to be very anti-medication. Some of their documentation needs to be treated with caution. Similarly, documentation from pharmaceutical companies and certain active groups may favor medication without considering the full side-effects. The choice must be weighed and considered - and it must be your own.
One thing to be particularly aware of is that there is NO drug which is effective against Aspergers. None at all.
The drugs are effective against co-conditions only.
I guess this leads us neatly into co-conditions...
Aspergers doesn't like travelling alone. There are usually co-conditions of one form or another. In fact, many children get diagnosed with the co-conditions long before an aspergers diagnosis is arrived at.
Sometimes a co-condition is present and sometimes aspergers itself simply "looks" like the co-condition. I've written a lot about co-conditions in the past and often the symptoms of the co-conditions are far worse than those of aspergers. There is really no reason why an aspie with no co-conditions cannot function as well, if not better than, any neurotypical (normal) person. Of course, I've never actually met an aspie with no co-conditions, so a big part of dealing with your child's condition will be learning what their co-conditions are and how they affect them.
To properly support your child, you'll need to be knowledgeable about more than just aspergers. You'll need to isolate and understand the co-conditions too.
Given that the worst aspects of aspergers tend to be social, it's well worth your time providing your child with extra-curricular activities which preferably have no connection with school. If your child is good at sport then get them into a team. If sports isn't their thing, a common problem for aspies due to their low muscle tone, then get them into another type of activity.
There are all kinds of activities and clubs which are less focussed on teams but still provide social outlets. These include reading, acting and chess clubs and one-on-one sports, such as Karate, Sailing and ten pin bowling. Scouts or guides are particularly good choices as they provide a lot of variety and often cater specifically for special needs children.
The main aim of these external activities is to surround your child with additional (backup) friends in case issues begin at school. It also helps to develop life-skills, provides social practice and depending on the activity, increases your chance of making contact with other parents and children with aspergers or similar conditions.
One of the keys to building self-esteem in your aspergers children is to find good role models for them. It's generally recommended that you ensure that your children are aware of their diagnosis and what it means. It's also best to tell them at a very young age so that they have plenty of time to get used to the labels before they begin to have any social impact. Teenagers have enough self-image issues of their own, so it's best to tell children in their first 12 years of life.
Once your children know about their condition, you should try to find successful relatives who have risen above the limitations of the label. Since Aspergers is genetic, it shouldn't be too difficult to find others in your family who share traits. Hopefully, they'll be confident and successful.
It's also good to have the names of some famous figures who can be paraded out every now and then. A good book for this is "Different Like Me: My Book of Autism Heroes". You may be very surprised at some of the names which crop up in connection with aspergers.
Getting Over It
I've seen a lot of surveys of people with aspergers and talked to a lot more aspies directly. In most cases, the aspie wouldn't change their condition if given a chance. It doesn't "define" them in terms of putting boundaries on them but it does influence and bond with, their personalities.
Without aspergers, people wouldn't be "themselves". With good support, your children will grow up to be an independent, happy and successful people who take pride in their individuality.
It feels like a rough beginning now but it won't be long before you can honestly say that you're proud of your aspie child.