The Parenting Aspergers Resource Guide
The Parenting Aspergers Resource Guide
- A mini trampoline can provide physical exercise and sensory input.
- Create a touch board, and attach a variety of materials from sand paper to carpet.
- Fill a tub with sand, navy beans, or other similar item that they can play in.
- Find different scents of potpourri that they can use for deep breathing.
- Hang a swing from your ceiling (if it is reinforced).
- Have music playing that your child enjoys - this can be calming music or vigorous music.
- String blinking Christmas lights around the room.
- Use a hammock for the child to lay in and receive deep pressure.
- Use a variety of lotions for both scent and touch.
- Use a vibrating massage-machine for deep touch.
- Use play dough for touch activities.
The purpose of this room is to waken your child's senses and also calm him down. It is most effective to create a schedule of when they will be provided free time in this room. It is probably not best to give them free access to their sensory area, as their will be other things that they need to participate in. Use this area at transition times, to provide a smooth transition.
This can be a “Catch-22” situation because, even though you want your son’s behavior to change in a positive manner, it might become more resistant or rigid if he is confronted or forced to behave in a manner that he finds disagreeable. This can become a long-term power struggle that can lead to your frustration and his feelings of failure.
In this case, giving your son rewards might have better results than imposing punishment. One possible solution would be “fun money” for your son. You can make or purchase “fun” (fake) money for your son to use when he behaves in a socially acceptable manner. The money can be spent for privileges, such as time spent with a video game, or other activities he enjoys. If your son behaves in an unacceptable manner, you can impose a financial penalty, and your son has to give a portion of the money back to you. However, if he has to give too much back, he might never earn the reward, so reserve the “fines” for very serious transgressions of the rules.
An effective economic-reward system is based on consistency in enforcing it and keeping the list of rewards/penalties attainable and short. Start this system with just one goal to earn reward and increase the goals as he gets a feel for how it works. Try using one standard-size piece of paper and list the rewards on the left-hand side and the penalties on the right-hand side. Your son will be able to comprehend this list without it overwhelming him. This way, when he is rewarded or punished, he will know that there are limits being set and he has a degree of control over how much he will receive or forfeit. Your son will feel a sense of empowerment with this system, and it will allow him to make choices; he will learn from both.
A structured reward system works well with Asperger’s children because they do extremely well with structure, consistency, and clarity. When there is no structure, the Asperger’s child feels that chaos is controlling his life. A reward system maintains structure for your son, and it eliminates chaos from his life.
Structure, consistency, and clarity will give your son a sense of mastery over his environment. Whether you incorporate the solution proposed above or one that you obtain elsewhere, you will be integrating predictability into your son’s life, and this leads to his being able to rely upon you as being supportive and fair in his upbringing. Children without Asperger’s Syndrome and within your son’s age range are coping with the beginning of adolescence. Children like your son are coping with the same thing, except they find that they have to deal with the Asperger’s diagnosis in addition to everything else.
You need to make sure that the consistency that we stress here is maintained for your son’s benefit. Do not let your feelings and emotions take precedence because of the stress that accompanies any child-discipline procedure. Stay calm and let him choose to earn reward or pay fines. Also, be willing and available to discuss discipline with your son; it’s important regardless of any diagnosis that your son has. Above all, be truthful and sincere; your son will know that you love him and care about his well being.
Intensive, sustained special education programs and behavior therapy early in life can help these kids acquire self-care, social, and job skills, and often improve functioning and decrease symptom severity and maladaptive behaviors. Claims that intervention "must" occur before the age of three for it to be effective are not substantiated.
- applied behavior analysis
- developmental models
- structured teaching
- speech and language therapy
- social skills therapy
- occupational therapy
There is scant reliable research about the effectiveness or safety of drug treatments for individuals with ASD. A child or teen with ASD may respond atypically to medications, the medications can have adverse effects, and no known medication relieves ASD's core symptoms of social and communication difficulties.
Though most alternative treatments (e.g., melatonin) have only mild adverse effects, some may place the child at risk. One study found that, compared to their peers, boys with ASD have significantly thinner bones if on casein-free diets. And in 2005, botched chelation therapy killed a five-year-old child with Autism.
- Prior to going on out somewhere, it is important that your Aspie is prepared for what is going to take place. Explain where you are going, what you will be doing, and how long you will be doing it. Use a picture story board that describes the basic steps of a shopping trip (one that you have already created for such an event).
- You may want to have your child engage in some physical activity and play so that he's calm for the outing.
- You will want to establish what the expectations are for your child's behavior during the outing. State these expectations immediately before exiting your front door. You will need to keep in mind his age when giving expectations. Don't overload him with rules, but be consistent.
- As you shop, ask your child to help you pick out some of the items; enlist his help.
- Monitor his behavior very closely on the outing. If you sense that he is becoming overwhelmed, intervene at that point. Tantrums are not only embarrassing for you, but for your youngster as well. He doesn't want to behave this way, so if you can help him avoid it, you should.
- If you are going to be out-and-about for an extended period of time, prepare for it. Bring with you activities or things that your youngster enjoys to keep him occupied.
- If he doesn't function well while out on trips, then start with brief periods of time at first. Go on an outing for 10-15 minutes, and if all goes well, reinforce that behavior. Then gradually increase that time period.
- If the outing is not for your child's benefit, then don't ask him to engage in an activity for extended periods of time. Don't expect him to sit quietly for hours while you shop -- that's unfair to any child.
- If a tantrum occurs at any point -- leave! Stop what you are doing, and get out of that store. DO NOT stand there and try to reason with your child at this point!! Also, don't create more tension by making a big deal of it. Just remove him from the area. This may mean just leaving for a few minutes until his behavior becomes calm, or it may mean putting the trip off until a later date and simply returning home. When your child has calmed down, tell him what was inappropriate, and why you left early. Try not to continue the discussion about his behavior once you are home. It is over!
- Create a social story about "how to remain calm during trips," and have your child read that story often.
- Reward your child with a special treat or activity if he completes the trip without incident.
- When you must make long trips (3 hours or longer), consider leaving the child at home with a family member or babysitter.
On the surface, the issue of right and wrong appears to be a complicated one for Asperger’s children, but it is not. Children with Asperger’s have very firm ideas of right and wrong, and they can become argumentative with adults and peers over issues of proper or improper behavior. They are typically unable to consider shades of grey and will perceive issues in black or white terms; however, they can discuss those issues with an adult and come to an agreement when solutions are proposed to them.
The good news is that Asperger’s children are known for being able to follow clearly explained and set rules that are consistent, and this trait can be used to help them learn right from wrong. As these children mature, they will learn right from wrong in a rote manner at first; but later they will develop a greater understanding of why something is right or wrong.
An important factor is that the rules, and the explanation for the rules, should be explained in a manner that they understand, and the rules should be consistently enforced. In fact, their inclination to learn right from wrong can be so profound, it might seem that Asperger’s children are pre-programmed to detect right and wrong, and they might even bluntly announce that a request or activity is right or wrong. Also, they will take notice of others’ incorrect behavior, but not their own; this can be perceived as a double standard. In addition, they may not be able to show empathy for others, and this can lead to problems as they may do or say things that seem wrong because they may not be able to understand or empathize with another person’s feelings.
Children and adults who do not have a diagnosis of Asperger’s can relate to other people and engage effectively in social interactions with others because they are able to perceive things from another individual’s point of view. The ability to comprehend someone else’s point of view is the result of correctly perceiving speech patterns, body language, tone of voice, facial movements, and the situation in which communication is taking place.
Children with Asperger's and other autistic disorders can lack the capacity to relate to and understand others’ feelings or behavioral nuances, particularly on an emotional level. Also, the child’s inability to interpret someone else’s actions, whether deliberate or unintentional, can result in the child’s experiencing paranoia. This can result in inappropriate behavior.
Children with Asperger’s may not exhibit traditionally moral feelings or behaviors because Asperger’s denies them the ability to experience the capacity for some emotions and introspection on which society’s perceptions of morality are based. These children do not experience the feelings associated with traditional right and wrong; yet, they may possess a sense of ethics as well as a cognitive understanding of right and wrong.
Asperger’s does not completely remove a child’s awareness of correct and incorrect behavior; it does allow them to behave with a sense of socially acceptable morality if they are helped to do so.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome
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.
1. Waiting too long to take action.
I have worked with children who were diagnosed very early with ASD’s and looked like severe Autism (banging head into the wall, screaming, and flapping arms all day with no initiation of communication) at ages 2 and 3 but with early intervention and treatment looked like mild Asperger’s or even normally developing by the time they were five. When I first see children who are already early elementary school aged and never had services because people thought they were just late talkers, they have missed the optimal time for intervention and the prognosis for improvement is not as good.
We absolutely must catch them when they are very young and provide treatment. We need to get the message out that it is better to help kids who would have been fine either way than to overlook kids because we think they will “grow out of it”. Time and again I get kids who are 5 years old and the parents have known something was not coming together right for years. We have to get rid of the stigma/fear and show people that getting help early works and is worth stepping through the fear and advocating for the services their child needs.
If you don’t build in the predictability where it is possible, he has to find ways to cope and you might not like his preferred coping mechanisms (rocking, flapping, withdrawing, tantrum). Certainly, we cannot predict every situation in life, but having a core routine within the family is usually very helpful for the child with Asperger’s. Preparing a child for changes in the routine is also helpful.
In Johnny’s case, perhaps the water was not working the night before and you had to get the bath before school. If Johnny retains verbal information it is important to tell Johnny the night before what to expect the next morning. Ideally you would make a schedule (written, pictures, photos depending on his abilities) so he can visually see what to expect out of the day.
This is so helpful when changes in routines are necessary. That being said, it is also possible to OVER schedule the routine. I have found that children with Asperger’s are often so dependent on their routines that it can be very disruptive to alter them when life happens. For this reason, many parents have found it helpful to build adaptations and variations into their regular routines. They teach their child to cope with the many changes in routines that happen all the time.
Failing friendships are a challenge some higher functioning children with Asperger’s can face. For example, Jane, a 7 year old, is friends with Leanne. Jane has Asperger’s and does not like to be in large groups of people. Leanne is also 7 and is the daughter of Jane’s mother’s best friend. Jane likes to swim, Leanne likes to talk to her friends. Jane often becomes frustrated and is not sure what to say when Leanne is around. She doesn’t read her social cues and does not know how to get into the conversation, nor does she have a desire to talk about what Leanne and her friends are talking about.
Find activities that your child is truly interested in and help them cultivate friendships within those activities. In Jane’s case, she enjoys swimming so finding a swimming team or class that she can attend regularly and then role playing and coaching her to help her with social skills related to those relationships will evolve into people who know Jane and share an interest with her. Ideally, in the future those friendships will turn into a network of advocates and friends who will share Jane’s interests and appreciate who she is as a human being.
4. Expecting the child to know what to expect when they don’t, this is particularly true in social situations.
Imagine how a birthday party must seem to a child who has never been to one. People singing while a large bright colored blob that is on fire is brought out in the dark (the cake with candles). Imagine how it would feel to go to your first day of Kindergarten when you don’t know where to go to use the toilet, are not sure how to ask other people if you can play with them, and don’t particularly care much for being in a room full of people.
I find that children with social skills challenges do best when placed first into social situations that interest them AND have lots of structure. For instance, even an uncoordinated child will often enjoy non-competitive group sports when the rules are very clear.
Ideally as they age you expose the child to more social situations and provide them with information about what to expect and how to behave. For instance, if they are meeting their teacher, you let them know that they will be meeting the teacher and what it involves. Meeting the teacher involves going to the school, walking into the classroom, saying “Hello, my name is Joe”, making eye contact, and shaking the teacher’s hand. It also involves listening to the teacher introduce themselves, and answering a question or two if the teacher asks. Joe might also have questions about the class that can be answered then, but his parents must be familiar enough with his needs to help him know what to ask. Carol Gray’s Social Stories are a great resource for children learning to interact socially and role playing is often helpful.
5. Jumping on the latest thing instead of analyzing their child’s needs and finding the right tools to help them as an individual.
Sarah’s family is well educated and has the means to provide her with whatever she needs. They see many specialists and try every new thing that comes out to “fix” Sarah.
It is critical to really think about what you know about your child before selecting different treatment options. Each child is so different and certainly there will be some trial and error, but there are often clues/indicators of what will work best for a particular child. Parents often disregard their parental instincts because they have heard something worked for someone they know and the child got much better.
The families I see who have the most success seem to be the families who know their child’s strengths and needs and have found a combination of strategies that are a good match for their child.
Yes, the teen years are the hardest, whether your son has Asperger’s or not! I think he probably has “hit” puberty, but it’s just beginning. Raging hormones and frustration with social interactions at school can cause a lot of anger and bad behavior during the teen years. Many teens need counseling to negotiate this time in their lives successfully. Consider counseling for your son -- starting now.
Your son is exhibiting rebellious behavior, and this type of behavior fulfills the child’s needs. Your son may have the need to:
- Avoid responsibility – Attending school, obeying parents
- Get something – His way in a decision, your attention, control over a situation
- Manage pain – Physical and/or emotional stress that must be alleviated
- Fulfill sensory needs – Relief from heat, cold, or to satisfy thirst
Your son is unlikely to identify with your feelings or comprehend others’ objections to his behavior. The only explanation you should use with him is to specifically state that the objectionable behavior is not permitted. Your son needs to follow rules, and following rules can help to focus and modify his rebellious behavior.
Behavior modification is a therapeutic approach that can change your son’s behavior. You need to determine the need that his rebellion/aggression fulfills and teach him an acceptable replacement behavior. For example, your son can be taught to ask for, point to, or show an emotion card to indicate the need that he is trying to fulfill. Sometimes, self-stimulating behaviors such as rocking or pacing are taught as replacement behaviors, but it will take time for your son to integrate these behaviors into his daily activities. If your son is severely out of control, he needs to be physically removed from the situation. Granted, this may be easier said than done, and you may need someone to help you; yet, behavior modification can be helpful, and it must be started as soon as possible.
For children and adolescents with Asperger’s, the importance of maintaining a daily routine cannot be stressed enough. A daily routine produces behavioral stability and psychological comfort for Asperger’s children. Also, it lessens their need to make demands. When you establish a daily routine, you eliminate some of the situations in which your son’s behavior becomes demanding. For example, by building in regular times to give him attention, he may have less need to show aggression to try to get that attention.
Ideally over time, your child will learn to recognize and communicate the causes of his aggression and get his needs met by using communication. Unfortunately, children who get their needs met due to aggression or violence are very likely to continue and escalate this oppositional behavior.
A behavior therapy program may help your son; however, an individualized program has to be designed for your son because children and adolescents with Asperger’s vary greatly in their handicaps and/or family circumstances. Treatment approaches that work well with other diagnoses may not work with Asperger’s. Consult a psychiatrist who can oversee a treatment plan as well as any medication regimen that your son may be need.
There are social aspects of sexuality that will need to be dealt with. You can use social stories to teach about sexuality as well as many other things. It is important that your child understand good touch/bad touch. They can be vulnerable in this area and you want them to be prepared in order to reduce their risk.
In order to be proactive, you will need to think ahead, and decide what is appropriate to teach your child at each stage of development. When talking about sexuality, use real terms. Individuals with autism do not pick up on social cues, so they need concrete terms about what you are talking about. Reinforce appropriate behavior, and when inappropriate behavior occurs (e.g., masturbating in public), redirect the child.
Plan ahead before going into the community. Let them know exactly what is expected of them while they are in the community. If your child is young and doesn't seem to comprehend, give them something else to keep their hands busy.
Using behavior modification techniques can be effective. For older children, adolescents, let them know that it is okay to do that, but it needs to be done in private. You need to decide that you will address the issue, and not avoid it.
Set aside some time with your child to talk about sexuality. If you only respond when an incident occurs you may be sending the wrong message to your child. Find out what your child knows about sexuality, again using direct questions. Find out if your child has concerns or fears about sexuality.
My child has been rejected by his peers, ridiculed and bullied !!!
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How to Prevent Meltdowns in Aspergers Children
Don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.
If your child suffers from Asperger’s Syndrome, expect him to experience both minor and major meltdowns over incidents that are part of daily life. He may have a major meltdown over a very small incident, or may experience a minor meltdown over something that is major. There is no way of telling how he is going to react about certain situations. However, there are many ways to help your child learn to control his emotions.
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Parenting Defiant Aspergers Teens
The standard disciplinary techniques that are recommended for “typical” teenagers do not take into account the many issues facing a child with a neurological disorder. Violent rages, self-injury, isolation-seeking tendencies and communication problems that arise due to auditory and sensory issues are just some of the behaviors that parents of teens with Aspergers will have to learn to control.
Parents need to come up with a consistent disciplinary plan ahead of time, and then present a united front and continually review their strategies for potential changes and improvements as the Aspergers teen develops and matures.
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Aspergers Children “Block-Out” Their Emotions
Although they may vary slightly from person to person, children with Aspergers tend to have similar symptoms, the main ones being:
=> A need to know when everything is happening in order not to feel completely overwhelmed
=> A rigid insistence on routine (where any change can cause an emotional and physiological meltdown)
=> Difficulties with social functioning, particularly in the rough and tumble of a school environment
=> Obsessive interests, with a focus on one subject to the exclusion of all others
=> Sensory issues, where they are oversensitive to bright light, loud sounds and unpleasant smells
=> Social isolation and struggles to make friends due to a lack of empathy, and an inability to pick up on or understand social graces and cues (such as stopping talking and allowing others to speak)
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Older Teens and Young Adult Children With Aspergers Still Living At Home
Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."
Parents face issues such as college preparation, vocational training, teaching independent living, and providing lifetime financial support for their child, if necessary. Meanwhile, their immature Aspergers teenager is often indifferent – and even hostile – to these concerns.
As you were raising your child, you imagined how he would be when he grew up. Maybe you envisioned him going to college, learning a skilled traded, getting a good job, or beginning his own family. But now that (once clear) vision may be dashed. You may be grieving the loss of the child you wish you had.
If you have an older teenager with Aspergers who has no clue where he is going in life, or if you have an “adult-child” with Aspergers still living at home (in his early 20s or beyond), here are the steps you will need to take in order to foster the development of self-reliance in this child.
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