Is it Right or Wrong to be Overprotective of your Autistic Child?

In my previous post I talked about my own experience with being overprotected by my family but now I want to speak about overprotecting autistic children in general. I’ve been told many times by parents how my posts have helped them understand their autistic children better so I feel some-what qualified to tell them what their child may or may not be feeling. This still roughly relates to my own personal experience but I’m taking myself out of the descriptions. Mostly.

It’s understandable that a mother or father would feel that they should shield their autistic child from the world, a world they are yet to understand and where they cannot intuitively pick up basic peer-leveled skills as easy as other children. It makes sense to. It’s a maternal instinct that just kicks in, but as I go on to explain there needs to be a balance between being protective but still slowly unraveling the mysteries of the world for your child and preparing them to navigate through that world for when you are no longer there to help them.

Most children will have 2-3 friends and the natural skills to pick up on the right and wrong social behaviour and may even learn other life skills from their friends. The social ability these children learn at a young age is already putting them ahead in terms of independence compared to a child with autism.  Because these children seem able their parents might give them some extra responsibility such as house chores or walking the dog. But even though an autistic child is significantly impaired compared to these children it’s still important to give them the same responsibilities as long as you are aware of their ability and limits. It’s especially important to get autistic children doing chores because it won’t occur to them that this is a skill needed in later life. You will have to very clearly in simple literal words explain to them that this is the case. You may have to do this for other things too such as the importance of school and how that will help them get a job later. An autistic child can either excel at school if they like the work enough or be way behind if they find the work uninteresting.

Never assume that your child will just get it because his or her non-autistic siblings can pick up on information quite well. This can relate from everything from brushing their teeth twice a day to keep away cavities to setting them up for their first year away from your care and protection. People with autism need routine to feel safe and have difficulty transitioning from change. Moving out of the home is a dramatic change for your child so you must carefully explain to them how everything will change. In my experience I had severe stress over unpacking and getting rid of boxes, unforeseen things like the moving van shutting down so I didn’t have any clothes, to meeting my older siblings in the city, to buying food and cooking it, to feeling like the house I lived in wasn’t a home. I was left alone with very few people to help me. Eventually, it occurred to my sister who I was living with that I wasn’t handling things and she stepped in and gave me some pointers. But I still wasn’t prepared for everything and there were a lot of anxiety attacks, almost fatal accounts with running into not-so-friendly people on the street to overcoming financial unrest.

Not preparing your child for their new life away from home can lead to developing anxieties and not knowing how to handle situations. This preparation needs to happen early in life, continue in adolescence and all the independence training needs to happen when they are at least 17. Getting them an after school job or just after finishing high school will benefit them when they are in their mid-twenties and working in a field they are passionate about and strive in.

Teach them about the not-so nice people in the world; the bullies, terrible bosses, swindlers, cheaters – every sort of unsavory personality you can think of so they know who to look out for and can never be taken advantage of. But don’t make them lose faith in humanity; there are still some roses out there among the thorns. An autistic person turning against non-autistic people or NTs is dark path you don’t want your child to go down. I’ve been there from time to time and it’s much better having a laugh with my NT chums then thinking they’re all out to get me.

Teach your child social skills from an early age so they don’t become confused and saddened over not being able to be like their peers. Tell them they are autistic but that just means they have a different brain that doesn’t pick up on social cues well nor can it understand what much more social people are thinking about or expecting them how to act. Tell them that they might have a hidden talent because they are autistic. Start giving them social tips. Don’t become angry with them when they may say something that sounds completely out of line but explain to them it’s inappropriate and tell them what is the more acceptable thing to say. I cannot stress enough that if you ever need to tell off your child that you don’t shout, that you explain to them that what they’ve done or said is inappropriate and tell them what is the correct way to act. Failing to do this will make your child think you are getting mad at them about nothing and they will start to see you as mean, scary and unreasonable.

Keep updated on their progress. If they seem to slip give them a bit of encouragement, say how well they did before and that they can still do this. If they’re upset about something don’t just say it will be ok, find the source and deal with the problem. Your child will most likely want a solution not a hug, although sometimes, they want both. Speaking of hugs leads me to another issue: the surprise hug. Autistic people may or may not like hugs but one thing they can’t tolerate is being surprised with human contact. Ask them if it’s ok and when they say yes give them a hug. Autistic people like to control the world around them to keep the chaos at a low. Chaos to them is sounds, chatter, movement, being bombarded with images – they like structure and routine and would like to know what will happen next. Eventually they may learn to deal with less structure and it might be good for you to slowly introduce this to them because life will not always allow them to have as much control over their environment, just note how they are feeling with a loss of structure.

One thing adults with autism know is what their limits are, some have even pushed themselves beyond that limit and have ended up with mental illness or suffered a loss of acquired skills and had to build those skills up all over again. We call it a long-term shutdown; you would know it most commonly as a nervous breakdown. So, don’t push your children to face their fears too much. Be wary of medication too as your child may be sensitive to it. Always check your family history for mood disorders and heart problems before giving them stimulant medication too.

On the one hand it is good to be somewhat protective of your child but you need to set them up for the world, know their sensitivities and limits and always do your best to understand what’s going on with them. Never brush them off when they say they are uncomfortable or can’t do something. Help them become calm and work together at overcoming this obstacle.

If my mother is reading this: You tried your best in an age where very little was known about high functioning autism. The medical profession was just becoming familiar with it and our town was much too small to hear the chatter from the cities. I’m happy you were protective of me because it showed love and understanding where others saw a stubborn and lazy child. I don’t even want to go back and change things because even though I would like to have a job like everyone else I wouldn’t be working towards a career I am passionate about. You taught me to love God, always be polite and put others before you. It’s because of being unsure about what was best for me as a child that I can now educate those in what I believe is the way to prepare their autistic children to become independent.  For that I thank you.

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Breaking the Bonds of Overprotection

We hear it a lot these days how children are being wrapped up in cotton wool or about the helicopter parents who can always be seen hovering near them, structuring their day including their playtime and never looking away for a second. Child experts say that it’s creating a generation of adults being ill prepared for the challenges of the world.

Now imagine an autistic adult being treated like that. Oh sure, I hear you with your ‘but it’s understandable, they don’t understand enough about the world and do require extra help.’ I agree to a point. See I was that over protected child. Not long ago I felt like I needed it because being autistic I was behind many children my age but even those with special needs need to grow up and acquire skills to help them navigate throughout this world.

Those skills were not learned while I was young. I have this suspicion that I was just expected to just get it when I was old enough. Maybe I was to pick it up from my peers. When I left home at 25 to live with my sister I was suddenly thrown into independent living without having the slightest clue about what I was to do, so naturally I had a breakdown. In the autistic community we call them shutdowns, they are commonly known as nervous breakdowns. Triggered by extreme anxiety both the body and brain shutdown, slow down, as if one was recovering from an epileptic seizure but there is lasting damage to the brain and recently acquired skills are lost. It’s happened to me about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.

But still I go on. I feel like I’ve spent a lifetime on the disability pension. A few years ago I developed PTSD and every kind of anxiety you can think of, and probably those that are yet to be discovered. I have depression too but I can survive the most agonizing day of depression more than I can get through another panic attack. Both feel terrible but both I have to deal with in order to continue living. Sometimes I mean that literally.

I’ve overcome a lot between the ages of 26 to 29 and I’ve still got much more to overcome. The latest was being too afraid to go to a music venue after some helpful fellow thought it was a good idea to grab me by the arm and tell me to stop taking photos. I couldn’t stay out in the open after that so I went backstage and filled up on cans of beer from Darren Middleton and Guy Pearce’s rider. Yes, I was working with them that night and had every right taking photos of them. It was both the best and worst night of my life. Then I took about 3 months off taking photos of bands because of the panic attacks I had every time I tried to leave my house. One of my friends wasn’t happy about that, said I bailed on them one night while I was shaking uncontrollably on the floor, the door knob just feet away from me.

Media passes to concerts

It’s not always been that bad for me and there have been times where I’ve just wanted to go out and live a life as normally as I can, even get a job just to see that I can, but this is when various members of my family have reminded me that I wouldn’t be good at that job or I couldn’t cope with it. It’s not just about jobs but owning my own house or living in a share house, studying something like physics, script writing and even photography online (hint hint).

Yes, it happened to me recently about two courses I wanted to study. One was the most part-time course you could give a person that involved learning script writing at NIDA. I went through all my usual preparations at such a big change in my life. I budgeted my money, planned a good way to save more money so when the fee was taken out of my account I wouldn’t worry about going broke and starving to death (quite a common worry with me), and I even got familiar with my new bus route. Then I was told it wouldn’t be right for me, that I couldn’t handle it. I was heartbroken and the next person who told me the same thing got a rather agitated reaction from me. I even began to stutter and the words just wouldn’t form into sentences. That’s also a very common thing to happen with me.

One of these people, ok my sister, suggested I look for a TAFE course on script writing and photography and even though I was still upset they didn’t believe that I could manage myself in a short NIDA course I went along and looked up the courses. I actually got a phone call from Open Colleges when I put my interest into the Professional Script Writing course and had a chat about what I wanted to get out of the course, but it seemed my plan to get work after the course might not have been the best path to take. Then it was recommended to me to take a photography course, so I considered it. The next time I saw my sister she again said that it might not have been right for me. I wasn’t just heartbroken but depressed. My other sister that I yelled at the night before was already on board with the idea – yelling at someone really does make them try to take your point of view a bit more seriously. But still one sister didn’t think I could handle it.

Their concern was understandable (even though a few years ago they denied I had any medical or mental problems) but the worst thing you can say to an adult with autism is that they won’t be good enough. It’s funny that there was a time where I would have loved for people to take my impairments seriously and now that they do I want them to lay off. I might have difficulties but I’ve had them for almost 30 years, and I’ve developed new skills and overcame many obstacles just to get to a place where I finally feel ready to study those courses that will give me enough knowledge and confidence to launch my career, finally.

I’ve been unemployed for a very long time that I’m actually over doing nothing all day but playing video games or watching TV. There were some attempts at becoming the next best Science Fiction author but I stopped taking that medication and the mania is gone and now I realise that’s probably not the best way to write. I got a lot of encouragement for it then but people didn’t realise what was going on in my brain at the time and it wasn’t healthy. I went through a down period after that and people wondered why I was not pursuing the writing or the photography or anything. This was when people denied I had any problems, it was also when I almost OD’d on Ritalin.

Now they deny that I’ll be able to manage doing a full on course of study. It’s funny to me because they are pushing me in other ways. Take flying. I’m terrified of flying on planes. It’s not so much the flight that worries me, but the airport and the breaking of my routine and being away from the sanctuary that is my house and going to a place completely new and alien to me. In other words I’m scared of change. They tell me I’ll probably be ok, some even say I’ll get addicted to travel. But you know what? This Certificate in Digital Photography is me getting on a plane. If they think I’ll be ok flying to another country then they’ve got to let me take risks and do something they don’t think I’ll be able to manage.

about three times. How I am still alive is beyond me and every time I have had to build up lost social skills and even had to learn how to take things less literally. But there have been changes that I have not overcome or don’t think I ever can; I’m less coordinated, my previously internal meltdowns are as loud as the planes that fly overhead my Inner West home and my emotional regulation is completely out of whack.