I received an email from a concerned parent who was struggling with her child's new label and I wrote a reply. Afterwards, when I re-read the reply, I thought that it might be a good thing to share with other parents who are in the same situation. So, names and places changed to protect the innocent, plus a whole lot more detail added, here it is;
The Aspergers diagnosis is always frightening and overwhelming for parents but you are not alone. There are lots of parents out there in the same boat and lot of very successful "aspies" out there too.
Your child will not be "defined" by their label. It won't describe them fully and it won't necessarily limit what they can do. All people with aspergers show considerable variation from one trait to another and the mix is always unique. More importantly though, your child is, and always will be, an individual.
First Steps - Acceptance
The first thing that you need to do with the label is to accept it. It's only a word. Your child may struggle with various forms of acceptance for their entire life so it's important that their parents at least accept them for who they are.
Accepting the label does not mean accepting all of the conditions, criteria and symptoms of the Aspergers. Your child will always be different and no child fits every part of the diagnostic criteria. Your child will also change as they get older, some difficulties and traits will get better and some will get worse. The label you're accepting is truly only a shorthand way of referencing your child's condition. It's a way of quickly giving your child's teachers, helpers and supporters a head start in understanding your child and providing the right level of care.
You need to accept that your child has aspergers. Accept that it's not like a broken arm which can be fixed - your child has the condition for life. This word is going to be very important to your child's future and only by accepting it can you gain access to appropriate support services.
One of the most obvious signs that a parent hasn't fully accepted aspergers is their statement that their child has "mild aspergers". Don't try to downplay things. Accept your child and their label for what they are and the set about dealing with them.
Understanding the Impact of Aspergers
There is no such thing as "mild aspergers". Aspergers is a difference of structure. There is no "mild". It is either present or absent.
The mild vs severe concepts come into play when looking at how aspergers affects a child's ability to go about their daily lives. There are a lot of environmental and parental factors at play here.
Environmental factors have significant impact on the degree to which a child with aspergers is affected by their label. For example; A child who has aspergers and lives in a big city is probably much more likely to experience difficult social and sensory issues than one who lives on a farm.
Of course, while this is certainly true in the early years of life, it's also true to suggest that children who live in places with greater environmental stimuli will find themselves adjusting to the stimuli. They will eventually be more resistant to the challenges that a busy and social city presents than their country cousins.
I'm not suggesting that you change your lifestyle or move house. Simply that you be mindful of the amount of stimuli that your child receives from the environment and try to reduce it, particularly during moments of stress. You should not try to remove such stimuli entirely though as your child needs to experience it in order to grow and adjust to their surroundings.
There are parental factors to consider too with the most obvious ones being overprotective or being overly negative (violent or critical). I know of parents who don't allow their children out of the house and who don't allow them to attend school simply because they are trying to protect their child from other children. Home-schooling is a very effective tool but it needs to be done for the right reason. A child with aspergers cannot learn social skills if they aren't exposed to social situations outside of the family home.
Similarly, negative parenting techniques can be very damaging for the aspergers child. I'm not talking about beatings, though obviously such behaviour is harmful. I'm talking about day-to-day negativity. Statements like "oh, you're useless" or "you'll never make any friends if you keep doing that...". We all lose our cool with our children from time to time but we really have to watch what we say. Aspergers children generally have more a more fragile self image than neurotypical children.
There are lots of other parental issues though and lack of acceptance is certainly up there with the worst of them. Your child will always be your child, regardless of the label. If you deny your child the label, you will find that you're also denying your child access to early intervention services that they desperately need.
Parenting a Child with Aspergers
There are some things that your aspergers child will need from you more than neurotypical children. Your aspergers child needs your love and acceptance. They need to feel confident of your protection and that they can tell you about anything that is bothering them without fear of criticism. Sometimes it's hard to hold back on criticism when your child makes what seems to you to be an obvious wrong choice - unfortunately, you have to "hold your tongue" at these times.
While a lot of what your child says will be "garbage", you'll find that interspersed between discussions on the detailed mechanics of various star wars vehicles and other discussions of the special interest, your child will provide you with profound insights. You'll have to listen though and be ready to jump on seemingly throwaway lines to get the full conversation.
Lines like "my tablet tasted funny today" or "that boy wasn't a good friend" should never be ignored. Follow them up because these are clues that something out of the ordinary has happened.
Children with aspergers don't always read the social signs around them. They miss non-verbal cues and they don't always react in the proper way to people and events. You need to be part of their lives and to be included in conversations about their day in order to help them understand why things are wrong and how they are supposed to react. These are learning experiences and should be treated as such. The best teaching methods do not involve anger, shouting or punishment.
Your child needs you to become their advocate. Don't hide the fact that your child has got aspergers from professionals who need to know. Teachers and activities co-ordinators, scout leaders for instance, need to know these things. You'll be surprised how many professionals will book themselves on a course or pick up a book to learn more about your child. What they don't know, they can't accomodate for.
There's a lot more to advocacy though. I'm not suggesting that you need to start a blog or carry a placard but you do need to make sure that the right messages are being sent. There's a lot of misinformation out there about aspergers such as;
- They don't have emotions
- Sociopaths and Psychopaths often have aspergers
- They only think of themselves
- It can be cured by chelation, brain surgery, special dieting or proper parenting.
- It's impossible for them to be in a relationship or get married
- Aspies always have children with aspergers
- They can't live independently
- Only males get aspergers
- Aspergers doesn't exist, it's just an excuse
- They are all geniuses
- They all do morally reprehensible things
- They cannot lie
- None of them can make eye contact
These are all myths.
There's a few good mythbusting articles out there including one from Boston.com and one from Health Mad.
A good advocate will protect their children from false information about their condition by ensuring that their teachers and supporters always have access to good sources.
I've added a lot more to this article than I originally intended, so I've decided to split it into two. Next time I'll look at blame-laying, IEPs, miracle cures and self esteem.