In this social work report I am going to share with you the 7 most useful tips and techniques that I have picked up when working with families as a social worker over the past 11 years:
1. Coping with the grieving process
For all families who have a child with Autism/Aspergers, or any disability come to that, there are always some feelings of grief or loss. This is not because you are rejecting your child or in any way being negative about them. But it’s just that when you plan for a family, spend 9 months in labor and then begin to raise your child you have a certain dream/ideal life planned out.
This is just human nature and one of the things that divides us from animals. We have the ability to see our future in our heads and we like to plan it. Particularly these days when there are so many shows, in fact whole TV channels, dedicated to having babies, family planning, pregnancy etc. There are shows on “taming toddlers”, home improvement shows teaching you how to make the “perfect nursery”, adverts for all the latest baby kit and gadgets.
So it’s little wonder that you have such dreams and ambitions, and have the perfect little family in your mind. Having a child with aspergers can often destroy that particular dream. You may well spend time slowly realising that perhaps “something is not quite right” with your child. Some time after that you will get a clinical diagnosis and learn that your child has aspergers syndrome.
With this knowledge a grieving process will begin. This is a grieving process for the “perfect” child and “perfect” life that you were dreaming of. This is a perfectly natural and understandable process. It doesn’t mean that you don’t love your child or think anything negatively about them.
It’s just that your child is different to what you expected. Now just look at that word “different” the dictionary definition is “differing from all others”, and is that so bad? So it’s not a good thing or a bad thing, just a different thing.
A really great way of looking at this is in the short story by Emily Perl Kingsley which you can read at http://www.aboutautism.org.uk/holland.htm
But for many parents this can be a hugely difficult thing to get through. Often there is guilt attached to these feelings of grief. This may be guilt that you feel that you don’t truly love your child as you are feeling this sense of loss. Or perhaps guilt as a parent that somehow it is your fault that your child has aspergers syndrome.
So often with feelings of guilt, just like other painful feelings, you can choose to avoid those feelings.
So instead of talking about those feelings and starting to understand them, and eventually come to terms with them, you stuff them away somewhere in your brain.
Just like we can all do with painful thoughts and memories. Often you may choose patterns of behavior that can be destructive such as overeating, drinking more alcohol, spending more money than usual to cope (or retail therapy as it is now called).
You may not do these destructive things though. You may overcompensate by trying to be “super mum” or “super dad” to your children, at the expense of all else.
But the bottom line is that if you do avoid these feelings then they are not going to simply go away forever.
Now again let me be clear on this I am in no way making you a bad person for this.
As we all try to avoid negative feelings and thoughts if we can. In fact our brains are wired up to try to get us out of pain as quickly as they can. But such intense feelings of grief, loss, bereavement call them what you want won’t just go away.
They will show themselves in a variety of damaging other ways. For instance you may adopt a very blaming approach to all kinds of people involved in your child’s care. This could be teachers, paediatricians, psychologists, social workers etc.
In this way all of your anger and grief is being directed at other people. This can cause problems in building relationships with people who are there to help you.
It also will mean that such negativity will stay with you for years, like a big weight on your shoulders. By expressing your emotions in this way it won’t make you feel better or allow you to heal psychologically in the long term. In fact it will set up an endless cycle of negativity towards others that will further deplete and drain you emotionally. Another way that your grief may show itself is, if you are not able to deal with it, maybe in some degree of mental illness. Conditions like depression or anxiety can be quite common ways in which your unresolved grief may appear.
Obviously none of these are conditions that are helpful to you when trying to understand and become a good parent to your aspergers child.
Those are just a few examples of the problems that you could encounter by not openly expressing your feelings. Physical illness can be another side effect. As you may well be aware your physical emotions can be very acidic in your body’s system. Think for a minute of how tight your stomach can feel or how cold your blood can feel when you get really anxious or worried about something.
That is acid being physically built up in your system and clearly excess acid in your system can do all kind of damage to your internal organs. Add to this the impact that it may have on your immune system, which may make you much more susceptible to a whole host of diseases. So failing to tackle your emotions can put you at a disadvantage both mentally and physically.
Now that’s quite a bleak scenario. But what I want to do is give you help and hope, not scare the heck out of you. So the secret of this is simply to talk about it.
Talk about those feelings of loss that you have and you can avoid these undesirable scenarios. If you feel at times that you have been cheated of a “normal” healthy child who will do all of the “normal” healthy things in life you need to talk about it.
I use the word “normal” in speech marks as clearly for the aspergers child what he or she does is normal – and everything that you and I do will seem abnormal and weird. So “nearly” is clearly a very relative term. But I digress………….. and at risk of repeating myself you must talk about it.
Now the next question may be who should I talk to? Well that is going to be dependent on you and your personal circumstances. Clearly a trained counsellor or relevant social/health care professional should hopefully have the skills to really help you to open up and talk about this stuff. Now dependent on which country you live in you may have free access to this service, or you may be required to pay for such a service. But it doesn’t have to be a professional though.
A sympathetic and understanding friend or family member could be of great help.
Providing that they are not a person who will spend the entire time talking about themselves, judging you on what you say, making you feel in anyway bad or offering you endless opinion on what you must do. At first it may be difficult and give you a whole variety of emotions (some good, some bad) but you need to stick with it, in order to move yourself forward. A good way of explaining this that I was told by counsellor once is that it’s like having a gaping wound in your leg after you have just fallen over and damaged it.
So you have a painful wound with blood, filled with dirt and muck. To heal the wound you have to rake all of the muck and clean it up. This is exactly what you must do with your feelings of loss, guilt, anger etc. In order to heal yourself you must get those feelings that can appear unclean, dirty or tainted out in the open and then they can be dealt with. Allowing you to move on more positively in your life. So the one thing for you to take from this is that you have to talk about your feelings to help yourself.
2. Look after yourself
Another important issue is making sure that you do look after yourself.
You need to look after yourself to help you enjoy your every day life and be the best parent you can be.
If you expend every single ounce of time and energy on others, and none on yourself, then you will soon be left with nothing left to give.
You cannot consistently do your best as a parent, or really expect to feel happy and unfulfilled as a person, if you do this.
Using the simple idea of a car – it runs best when it is full of fuel. And obviously the opposite of this is that when it has no fuel it stops completely. This is just like you as a parent – and the way that you ‘refuel’ is by looking after yourself. This is a mental and physical process and I will talk about both of these soon.
I know that the big problem for most parents is finding the spare time or energy to take for your self.
But if you really look hard enough at your life you can always find the time. More about this in a little while also.
First of all I am talking about looking after your self physically. Now don’t worry I am not going to start saying that you should go on 6 mile runs on a daily basis, or punishing yourself physically for hours down the gym. I am talking about firstly being aware of your ‘refuelling habits’ or, in other words, what you eat and drink.
If you drink excessive coffee, alcohol and sugary drinks. And also eat a diet largely based on processed foods, sugary foods, fatty foods and salty foods then the chances are that you may have some problems. Living a lifestyle like this can obviously contribute to weight problems, energy problems and physical ailments.
As well as this it can seriously affect your moods; perhaps making you feel tired, depressed and utterly lethargic.
Now this isn’t a healthy lifestyle resource so I am not going in depth into this here. But I have written a book on that subject, so email me if you want to know more.
But common sense tells you that if you look and feel overweight, lack energy and are prone to feelings of depression; then your quality of life and ability to parent will suffer.
The key to improving this area is to re-fuel much more on non-processed natural foods such as water, fruit, vegetables, fish, nuts, brown rice, pulses etc. Again I am not suggesting a whole lifestyle change – but this is something that you could start adjusting in your life and track your own results in how it improves your life. In addition to this aerobic exercise is another quick and easy way of making you feel better.
Like I said earlier this isn’t intended to cause you physical damage; so you need to do it to whatever level you are at. And always consult your physician before embarking on any course of fitness – as the adverts always tell you! The only thing I would say is that you need to do 20-30 minutes minimum at least 4 days per week to really feel the results.
If you are at the level of slow walking then great do that and build up. If you are able to jog, swim, cycle, rollerblade etc. that’s great too. Exercise will help you lose weight, secrete endorphins (little chemicals in your brain that make you feel good) and generally improve your ability to cope with things.
At first it may be very tiring and seem unnatural but in order to have more energy in your life; you need to exercise. One of the problems for many of us is that we are so stationary in life and we were not built to be like that. One of my all time favourite quotes from Tony Robbins (the famous US Life Coach guy) is that “emotion comes from motion”. By engaging your body more you do feel better.
I can honestly swear by this through personal experience. I now exercise 7 days a week and feel phenomenal afterwards. He also advises first thing in the morning as the best time to exercise as it turns on your metabolism to burn fat for the whole day. And it gets your day off to a great start with a “victory”.
But it’s not essential; you can do this any time of the day and still benefit. So for those of you pressed for time try setting the alarm 5 minutes earlier each morning for a week. Voila – you have 35 extra minutes each morning after 7 days; with which to look after yourself.
On the mental side it’s important to look after yourself by having people to turn to and talk to. This can be on serious issues as well as the enjoyment of just a good old chat! This can be friends, close family, relatives, support groups etc. I think another thing that really helps is to have something that is “just for you”. Not part of your role as a parent, wife/husband, friend, worker but YOU. Whether this means spending time reading a favorite book, playing an instrument, tending your garden, attending a college class.
It doesn’t matter what it is – if you want to do it and it’s important to you; find a way to do it! You may have to very creative to find the time but generally if you look hard enough, there is a way around every challenge in life. It will help you to have this specialist interest of your own in the world, and provide you with emotional strength/respite.
3. Adapt your lifestyle/routines
As you are probably well aware children with aspergers tend to thrive on routines and consistency. And they really struggle when things are unpredictable and liable to change without warning. In addition you will soon learn, by trial and error, which type of environments suit your child and which ones don’t. So the key to a happier family life in many cases lies with both understanding and accepting this.
Many families run into trouble when they try to simply slot their aspergers child into the normal routine. For example they go out for the day when the parents feel like it (rather than at a set agreed time). They have to go to the crowded soccer field with their mom to watch their brother play, or go the busy store to help with the weekly food shopping.
At this point many parents wonder why their child is shouting, screaming, aggressive or generally upset. This in turn is seen as some kind of “bad” behaviour, or as some unavoidable consequence of aspergers.
In actual fact if the schedule for the day had been run differently to suit the aspergers child it could all very well have been avoidable. Now I know many parents like to be laid back and not have to make definite plans (it’s one of the privileges of being an adult right?) and also practically struggle to juggle domestic/child care duties. So I am not saying that this stuff is easy. But equally doing things without proper regard to the impact on you and your child helps no-one.
So for potentially difficult events like the busy soccer crowd or the supermarket – is it really necessary for your child to go? At times there are probably other options.
But if not then some pre-planning can also help in the form of explaining what may happen at the event, how to react to certain possible situations and possible “escape” strategies if it gets too much to cope with for the child.
Similarly try to plan/schedule events so that your child has a clear idea as to what will happen in the day ahead and so be expecting it. This will greatly cut down on the difficulties that you can at times experience with your aspergers child.
Unfortunately the world is an unpredictable place so you cannot plan for every eventuality. But just putting a little thought into the need for consistency and structure in the aspergers child can bring some surprisingly good results all around.
4. Arm yourself with knowledge
The very fact that you are reading this short book of tips shows that you are aware of the importance of this point. So I won’t labor it too much! But the world is a fast-changing place these days and new ideas, research, viewpoints etc. are frequently coming out on a daily basis. And the world of aspergers is no exception! The internet is by far the easiest, most up-to-date and cheapest place to get this information.
Every day people are posting ideas on forums, adding content to their websites or writing stories about new developments.
One really helpful tip to keep on top of all the new content on the web is a little free feature called Google Alerts. I am sure that most of you are familiar with Google.
For those of you who are not they are THE biggest search engine on the internet. Estimates say that at about 70-80% of people who search online use Google.
So to get to Google’s home page you need to type in www.google.com into your internet browser (or just click the blue link I just gave you!). Then click on “More” and then “Alerts” then enter the word “Aspergers” in the “Search Terms” box and your email address and then you are away!
5. Get Support
Now all of us need support from time to time to encourage us and help us get through testing times in life. Many parents are fortunate that they can get support from each other, other family members or friends. But there are situations when this is not necessarily the best choice. Sometimes being able to talk to other people in the same situation (i.e. parents of other aspergers children) can really make the difference. This can be really helpful for letting off steam in an environment where you don’t feel judged or that you cannot say what you really think for fear of upsetting your husband/best friend/mom.
It is also a great way of picking up little tips or bits of advice that only other parents might now about. This could be particular approaches to helping your child, the name of a good therapist or a local event that’s going on.
Now support groups are traditionally held in public places such as church halls, recreational centers or school buildings after hours.
People come together to talk about different issues and there are often social spin-offs like trips out, coffee mornings and other such gatherings. But nowadays there are many different “virtual” support groups available on the internet.
You can access these without leaving the house and there are often people around 24 hours per day to interact with, due to the different time zones around the world.
I would recommend using both local and internet based support groups to get the best of both worlds. But ultimately the decision is down to you and what best suits your personal circumstances.
Support is also available from different professionals who may well be involved with you, your child and your family. This will often be just as helpful but in different ways. Teachers, social workers, health workers, psychologists can all offer a great deal of advice, techniques and insights into various aspects of aspergers. Most professionals in these fields are also trained, and develop through experience, the ability to be supportive, non-judgemental and empathic to your situation. So be sure to maximise these sources of support too. And never be afraid to pick up the phone to ask them for support.
6. What’s the reason?
One of the most important things that I can suggest for parents when confronted with any behaviour by your child is to always think “what’s the reason?” I know that this is easier said than done when your child is suddenly shouting, screaming or having a fully blown tantrum in a very public place. But whenever possible the most effective method is to quickly look at what the reason for the behaviour is – rather than an automatic reaction. Without wanting to baffle you with psycho-babble; an excellent technique that I use as a social worker is the “pain/pleasure” principle.
Now I am not going to take credit for this idea – as it is a concept that I have adopted from Tony Robbins (the life coach expert I mentioned earlier).
In fact this is slightly off-topic but if you want to equip yourself with some amazing tools and techniques to change every area of your life (your finances, emotions, physical fitness, health and spirituality) then check out his website at www.TonyRobbins.com
He comes with my highest endorsement; using his stuff his improved every area of my life infinitely over the past 4 years. Anyway I digress – the “pain/pleasure” principle is a basic way of understanding what motivates all human behaviour.
As human beings all of our behaviour can be explained at a most basic level as either helping us to get out of pain or get into pleasure.
For example over-eating gets you out of the pain of boredom/discomfort and also gives you the sensory pleasure of eating the food. Similarly smoking can get you out of the pain of a situation (for that short period when you inhale and exhale) and give you the pleasure of a comforting, soothing habit.
So OK can I really apply this to my child? Absolutely – any behaviour that your child may display can be seen at this basic level. So if your son starts to suddenly freak out in the store and shout noisily what does this mean? Well in all likelihood they will be getting out of the pain of a situation (maybe it’s a sensory problem of too much light, noise or people) by controlling their immediate environment through the noise that they are making. And similarly to the cigarette example there is probably some pleasure that they are getting from being able to instantly manipulate and control their environment.
So what to do next?
Well the key to this now is to help your child find a more appropriate way of gaining pleasure or getting out of pain, than shouting.
So maybe there is a song they like that you could sing to them, a familiar topic/discussion that you can have with them.
Or alternatively if you are sure that it’s a particular part of the environment that they are in, then get them out of the environment. Don’t persist with the situation, shout back or think of your child as bad/naughty. Remember that all behaviour has a reason and once you find out what that is you are half way there.
7. Prepare For Meetings
I know that many parents find meetings with professionals to be intimidating and daunting tasks. They needn’t be in fact in my opinion they certainly shouldn’t be.
One easy way of getting around this is to make sure that you don’t go alone.
Take someone who can help, and if necessary act as an advocate for you and your child. This could be a relative, friend or professional advocate.
But make sure you choose someone who can be calm, objective and who will not let their own issues/agendas affect things. Another great tip is to make sure that you clearly have your own questions/agenda for discussion written up to take with you.
You can bet your bottom dollar that the professionals will have a written agenda, so it’s important for you to do the same.
I even go one step further when attending important meetings. I play them out in my head beforehand. That way I can “see” what will happen – and have chance to think of answers/questions, iron out any problems or difficulties that may arise.
Before they happen! I would advise you to do this and you will see what a difference this makes when it comes to your next meeting. But my most important piece of advice is to remember that 99% of all professionals who are working with your aspergers child are doing it for all the right reasons.People in social and health care are drawn to this kind of work because they really want to help other people. So bear this is mind – that the people involved are here to help you and your child.
The Parenting Autism Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Autism.