I’ve been noticing more and more when I speak with people that do not know Carter has autism and when I mention that he does… I always get the same reaction… Their faces look surprised and then concerned and then sad and then “I would have never known if you had not told me”… then the conversation demeanor changes. I understand – people do not know what to say. It’s kind-a-like when someone dies – you do not know what to say – sometimes you say the wrong things – some times your stutter around the subject -sometimes all you do is hug the person. I get it – before Carter was diagnosed I did the same thing when someone told me their child had autism.
Here is the deal – autism is not a bad word. Autism is not a death. Autism is not a “feel sorry” for the family. Autism is – well… it is what it is. Autism is a developmental disorder, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts. Some forms of autism are worse than other forms. There is such a HUGE umbrella with autism.
I have read other autism parents blogs and every one of them have similar stories to mine on how people react… and the fact of the matter is WE autism parents should not expect someone to react in a “OH THAT IS AWESOME YOUR CHILD HAS AUTISM” kind-a way… WE should acknowledge that people just do not know how to react… Again, if it has NOT happened to you, your child, your family – then how is one to know what to say or how to feel about the subject. I still have issues on how to “accept” and “deal” myself….
Over at “Autistic-ally Beautiful” they explain so well the 9 different ways people react to your child with autism…
1. The Helpers.
These are the people that you want desperately to be on your team, but unfortunately are few and far between. The helpers WANT to help. They take a hands-on approach and go above and beyond what anybody else does. They offer to babysit and are more than happy to spend time with your child. They are good listeners and are always interested in hearing about your child’s progress and their current treatments. They are active in learning and ask if they can borrow your latest book on autism once you have finished reading it. The world would be a much better place if it contained more of ‘the helpers’.
2. The Diagnosers.
The diagnosers are those that think they are experts on autism. They may know of a child with autism or worked with a child on the autism spectrum ONCE. They have a PhD in autism because they have watched the movie ‘I am Sam’. Because of their wealth of knowledge and expertise in the area, they dispute your child’s diagnosis.
“But he/her doesn’t bang his head against the wall, so it can’t be autism”, “I don’t think he/she has autism, I think he/she is just a late talker”. These are the people that make you angry, to the point of tearing your hair out. It doesn’t matter how much you try to educate the ‘diagnosers’, they are set in their ways and adamant that your child does not fit the criteria of what they believe autism is.
3. The Burrowers.
The burrowers are those that appear to have their ‘head in the sand’ and hide away from you and your child after learning about the diagnosis. They suddenly stop dropping around for weekly visits. They suddenly stop calling. No matter how hard you try to organize catch-up, they are always too busy with work or busy with life in general. When you accidentally bump into them in the street, they put their head in their hands and run in the opposite direction. Eventually they drop off the face of the earth, never to be heard from again.
4. The Curers.
The curers are enthusiastic and try to get involved after learning your child’s diagnosis, but they tend to offer the wrong advice and sometimes become a little bit irritating. “I read that fish contains mercury, so you shouldn’t give your daughter fish”, “I think that if you took your child’s dummy away then he/she would be able to speak”, “There was an episode on A Current Affair that discussed a new program that cures autism, you should enrol Chloe in that”, “I’m not going to get my child vaccinated because vaccinations are what cause autism”. I especially HATE hearing that last comment!
Although the curers ‘mean well’ and try to offer helpful advice, they really can become quite irritating at times.
5. The Optimists.
The optimists are happy-go-lucky people who believe your child is fine and will “simply grow out of it”. They make reference to people they ‘know of’ that have had autism, and who have managed to ‘get rid’ of their autism.
They are very reassuring and always look on the bright side of life. “He/she will learn to talk soon, you’ve got nothing to worry about”, “He/she seems very smart, they will be just fine at school”, “He/she is so cute, so you don’t need to worry”.
These people also believe unicorns are real, and there is a pot of gold sitting next to a happy little troll at the end of the rainbow.
6. The Punishers and The Flaming Trolls.
Oooohhh the punishers, how I despise thee. Thankfully there aren’t too many of them around, but those you encounter really are nasty and deserve to be shot. You can sometimes meet them face-to-face, or read their nasty comments online. Punishers are those that blame your child’s diagnosis on “bad parenting” and believe that your child just “needs a good smack”. Typically these arseholes are old fashioned set in their ways. However there is a new generation of punishers that seems to be emerging.The new generation of punishers consist of new-age sociopaths that blame the ‘autism epidemic’ on mothers trying to claim welfare benefits. They don’t believe autism is real, but rather a fabricated story told by mothers to explain why their children are naughty. They take on repulsive attitudes and say disgusting and untrue things- this is why they should be shot!
The Flaming Trolls are ‘punishers’ that appear in discussion forums and post nasty comments on websites. You may have come across them before, ranting and raving within a discussion forum and making everybody else really angry. The ‘Flaming Trolls’ are essentially every bloggers worst nightmare, and are usually the first to be ‘blocked’ from contributing to a website.
7. The Jokers.
This group of people attempt to turn everything into a joke because it’s the only way they know how to deal with it. They can be funny at times and make you laugh, but other times they can become a little frustrating, especially when you want a serious response from them. But at the end of the day, they always manage to put a smile on your face and simply want you to have a good time. The jokers are good to have around when you are in need of a pick-me-up, and are valuable in that they are enthusiastic about mucking around and having a play with your child.
8. The Sympathisers.
The sympathisers are funny in a way, because their approach to any situation is that everything is cured with a hug. They are very good listeners and come armed with a box of tissues whenever you need to vent, but giving a hug is their number 1 solution for everything. The sympathisers also take on the positive qualities of ‘The Helpers’ and ‘The Jokers’, but are more sympathetic in their approach.
Traditionally the sympathisers come armed with a box of tissues, ready to hear your stories. However the new generation of sympathisers comes armed with a bottle of wine. They really do know how to listen, and friendships with the sympathisers are quite close and last for long periods of time.
9. The Relatives.
All the above.
Which I can’t agree with number 9 so much on “all the above” – my relatives have been nothing but supportive and treat Carter as no less than any of the other children in our family. They are “The Helpers” in our lives… without them I do not how Todd and I would get by without their help. We have an awesome family. However, I do have friends with children with autism that would agree with number 9.
So – next time you talk to someone that tells you their child has autism… react with a caring heart – no pitty – just a caring heart… Maybe react with “I don’t know a lot about autism. Can you tell me what it is?”
The most important thing to remember, when talking with an autism parent, is that all we want from you is that you can hopefully understand our child. Majority of us are willing to talk about how autism affects our families, our lives and are willing to answer any questions you may have. What we don’t want are cliche’s or assumptions. If a person tells you their child has autism, ask how the child is doing. Ask what the child is like. BUT ALWAYS REMEMBER – the child is that person’s whole world and is loved very much.
Listen to what the parent tells you and really hear what they are trying to tell you. Their child is amazing… he is brilliantly artistic… he is musically inclined… he is a little Einstein… however, he comes with some extra trials and tribulations. They may also tell you that their stress level of dealing and coping with the situation at hand has almost pushed them and their family over the edge. Parents of autistic children will be dealing with “it” for the rest of their lives. A lifetime of worry, a lifetime of issues, a lifetime of up-hill and down-hill battles… Unfortunately, autism is not something that will ever go away for them.
The point of this post is – autism is not a bad word… autism is not the end of the world… autism is real like any other disability… however, autism is hard to understand for those that just don’t know… I get it… I understand… but I wouldn’t have gotten it or understood if “autism” was not a part of my life now… that is one reason why I started this blog – to help myself and to educate those that don’t get it and don’t understand…. it’s okay not to get it and not to understand – EDUCATE. 🙂
This quote is for me – I never judged people that had children with autism – I just had the same reaction to “my child has autism” I get now… and now I am walking in their shoes. One never knows what new challenges life will bring them –
“Don’t be so quick to judge, you never know when you might find yourself walking in that persons shoes”