Tuesday, May 18, 2010

So... Your Child has Aspergers - Part 2

"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

Early Intervention
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.

Co-conditions
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.


Self Esteem
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.

12 comments:

Clarissa said...

My parents only discovered that I have Asperger's a couple of months ago when I told them. When I was growing up, nobody knew anything about autism, so nobody could figure out that I had it. All everybody knew was that I was "weird." My mother always felt intensely ashamed of my "weirdness" and kept punishing me for every manifestation of it. As a result, childhood was an extremely miserable time for me.

When I read your post, however, I felt very glad that my parents never knew about Asperger's and it never occurred to them to try out all this advice on me. What you describe is hell on wheels for an Aspie child. Honestly, I'd even prefer my mother's abuse to the horror you describe. An Aspie child, who simply wants to be left alone to pursue her special interests, should be dragged from one activity to another, one team to another, one therapy to another. I'm getting a panic attack just thinking about it.

Autism is often a way that a child uses to escape from an intolerable home environment into a world of her own. Parents who are so blind to the needs of their children that they would put an Aspie on a sports team or into any kind of a group activity will only end up aggravating the autistic characteristics of their child.

Foursons said...

I have been wondering at what point to talk to my son about his diagnosis. I am so determined to not allow the diagnosis to be an excuse for bad behavior. It makes me more understanding of certain behaviors, but does not excuse direct defiance or unacceptable social mistakes. How do you recommend having the "talk?"

Jakob's low muscle tone manifests itself in fine motor skills. But as he gets older and moves up to more difficult leagues in baseball I am noticing that he is struggling more with gross motor skills than the other boys. He has always been advanced in gross motor skills until now.

Gavin Bollard said...

Clarissa,

I know that it probably sounds like "hell on wheels" but it's not. I didn't say that an aspie child should do all those activities.

It's true that an aspie child should do speech therapy and occupational therapy but those usually are done during class time (the child is usually taken out of class to do them).

I didn't suggest that the child should do a whole bunch of activities (one will do). I do believe that they need to do something in order to develop a "backup" group of friends.

You might find that your responses are coloured by the way you were treated as a child. I'm advocating that parents NOT be ashamed of "weirdness" and that they accept their child for who and what they are.

It's true that left to their own devices, aspie children will retreat inwards and focus only on their special interests. (though not all aspies have "special interests").

Allowing your child to retreat entirely isn't a good option either. Balance is the best way forward with both light group time and alone/recharge time.

Exercising the social aspects without pushing the child too hard can help them overcome many obstacles.

Rachel Cohen-Rottenberg said...

I think the whole issue of engaging an autistic child or adult in social activities is highly individual. Some people simply do better as solitary folks with a few friends and can't tolerate even a scouting group. Growing up, I tended to take part in musical activities, mainly because they delighted my senses without really forcing me to socialize as the first order of business!

I also wonder whether there aren't some serious gender issues at work here. In general, girls tend to be better observers of social situations and present very differently from boys; in Attwood's words, we become "little philosophers" of life rather than "little professors" caught up in the details of our special interests. So it may be that boys need this structured socialization more than girls do. Of course, this is only a generalization and there is plenty of room for variation.

Caitlin Wray said...

Clarissa, I think Gavin's post may be reading like an overwhelming amount of intervention because he's covered a lot of ground all in one short post. But in reality, it's not an overwhelming amount. I can attest to this because we do speech therapy, occupational therapy, chiropractic, naturopathy (supplements - which by the way are working WONDERS and I am a major SKEPTIC by nature), and a social skills group.

That sounds like I am an AWFUL parent. It sounds like I am dead set against Autism and I'm on a warpath to wipe it out of my son.

But I think Gavin can tell you, I am quite the opposite. I respect Autism. I appreciate it. I get that it's an integral aspect of who my son is, and I love EVERY aspect of him. I just recently commented on another blog in which a mom shared how she would reverse her daughter's autism if given the chance, and I shared my view - that I would not.

I don't provide these therapies for Simon because I want him to change, or become more NT. I arrange these therapies because they alleviate some of the most challenging elements of his Autism - the parts that make him LESS able to be himself.

The parts that cause him physical pain and discomfort (OT), the parts that make him angry and upset when he cannot communicate what he wants to (Speech Therapy), a long-shot chance that his neurological system needs to be realigned to free up some of his body's natural energy (chiro - verdict is still out on that one), supplements he is unaware of hidden in his food and drink which give him optimal health (naturopathy), and a fun, short, class with other boys who share some of his passions and who all learn gently how to accommodate each other's perspectives (social skills group). Each of these is once a week, except for OT which I now do at home for him, and chiro (which will be going down to once a week shortly and in any case is 5 minutes for each visit).

Simon is not overwhelmed with therapies, despite how it looks on paper. His week goes like this: Monday - social skills group which we refer to as "kids chat group"; Tuesday - swimming lessons (because every child should know how to swim from a safety standpoint, let alone the fun factor and the sensory input he gets); Wednesday - a 5 minute chiro appt on the way to Speech Therapy (which he enjoys); Thursday - free; Friday - free; Saturday - free; Sunday - church, but free the rest of the day :)

So you can see that despite how bad it looks at first, his week is actually full of way more free time than most NT kids I know, who have hours and hours and hours of sports and extra-curricular committments. We have so far only had one time conflict, which is that Karate was on Mondays, but it's the only time kids chat group runs, so for now we're doing kids chat group, but we will be going back to karate because Simon was HUGELY SUCCESSFUL in that class and feeling like he is competent, confident, and comfortable is EXACTLY what my goals for him are.

Anyhow, I just wanted to share my experience :)

Caitlin Wray said...

Foursons have you read The Everything Guide to Parenting a Child with Aspergers by William Stillman? He takes a very balanced view of the issue of behaviours, how to gently guide your child to ensure inappropriate ones are left behind without making your child feel badly for being different, or having unrealistic expectations.

William agreed to an interview for my blog, and I found his answers incredibly insightful. The interview will be up in the coming weeks.

Caitlin
www.welcome-to-normal.com

Darin said...

thank you for your useful article, I still reading many information about Aspergers, because my friends son has aspergers, he is 2 years old now, and his parent need support to make them feel better and build their spirit to taking care their son

Momof2withasperadhddepression said...

I am struggling.. My oldest son, which I do not seem to be able to get to.. He has depression (he is 7yrs old) he is on Respiradone and intunive. I just found out he has Aspergers/ADHD & Depression.. He is so negative ALL the time..No interest/no drive..He does not want to go to school. Just stay at home with me! He has some type of written problem.. trying to get the school to test him. They are always on him at school for his behavior! He is already in special ED and I am already tired.. He is so sad. He told the testing place he has already thought about killing himself, but would not do it!!! HE IS 7! I try all I can. He is in therapy... she is the one that said he needed to go on med.'s.... UGH!!! anyone with any knowledge I could appreciate in put/ideas... etc...

I also have a four year old.. Who rocks all the time and has sensory issues too...and does not sleep through the night. You tell him no and he has non violent tantrums... (only because he is on respiradone too!) He has Aspergers and ADHD too... I do not see the depression thought!! Thank goodness!! I am putting him in play therapy this week... again anyone who has some thoughts, pls. share. I run a tight ship and do my best... BUT... I am learning!! and there are not alot of places that info. on all these co-conditions to help people like me!

Miguel Palacio said...

For me, I learned I had it when I was already an adult. And for me it wasn't like "Congratulations, I have Aspergers!", but rather "Congratulations! I finally have knowledge that I have Aspergers!!"

Having knowledge of my condition and becoming more and more self-aware is what really accelerated my self-improvement. And not only to begin my journey to embrace and overcome my obstacles, but also to leverage the abilities with which I have been gifted.

The way that I see it, imagine, is that if I can overcome my obstacles, while still keeping the positive traits wherein I surpass the abilities of others, then it will be as me having the cake and eating it too! =P

The end result being that of an advantaged individual. ;-)

An no, I don't mean cure, just enhancement, and the ability to switch back and forth between NT world environments and my own Aspie one.

BTW, it's cool if you can team up with other Aspies while you're at it and within that comfort zone grow and learn from each other's experiences.

I really appreciate your blog Gavin, even though I'm several years behind in reading though it. I don't want to miss any if it. Thanks. :-)

Miguel Palacio said...

Regarding dissemination, everything you say can and will be used against you if the information falls into the wrong hands, especially after one is an adult in the workplace. I speak from personal experience and have learned my lesson. Now I'm _extremely_ selective with whom
I share my diagnosis.

Miguel Palacio said...

As an adult with two left feet, learning to march helped coordination when I joined the Air Force. I didn't particularly excel at marching (marginal at best), but it did help. Despite the improved coordination, one side effect was acquiring that particularly characteristic military gait that you see in many military folks. Karate and dance lessons too, and, at one point I was fortunate to have a girlfriend who was also a model and she had the audacious idea of me enrolling in modeling school, not to become a famous model, but to correct my gait. Great suggestion! I only made the pages of a couple of catalogs, but most importantly, I know how to walk and turn around without looking like Mr. Roboto. lol

I will forever be greatful to her for her kind suggestion. :-D

Miguel Palacio said...

As an adult, I inject myself into social situations, as a stretch experience. I belong to a volunteer organization where at least I know I'm free to go to a safe place afterwards and seek refuge. xD