Autism @ Home

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- Living with autism


Every family member has another position, another relation with the autistic family member. This means the reciprocal adaptation for everyone is different. A younger brother might adapt less than a granny. The demands on a mother can be more than on a father.

Autism presents challenges for the entire family of an individual with autism.
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Parents
Parents of children with autism face all the normal pressures of parenthood such as keeping a child safe, coping with normal misbehavior, and ensuring their children lead a happy, healthy life. But they also face significant difficulties as a direct result of autism, which poses its own set of parenting questions, like:

• How do I keep my child safe when he wanders out of the house, doesn’t understand the dangers of everyday items like appliances, and for instance presents self-destructive behavior?
• How can I be certain my child’s special educational needs are met?
• How do I make sure the needs of my other children are met?
• How do I avoid undue stress on my marriage because of the added pressures of autism?
• How do I handle the mental and physical changes that come with adolescence in a child who doesn’t understand these changes or the social issues that come with them?
• What will happen to my child when I’m not there to take care of him anymore?

For parents, having a child with autism can be both stressful and frustrating, especially when you see other parents with normal children. However, no matter how hard you want your child to be as normal as possible, all you can do is lessen the effects of the disorder and make your child live a happy life. Autism sustains a great amount of misery and pain to both you and your child. But this does not mean you have to sit down and watch hopelessly as your child grows up differently. As mentioned, you can do something about it to minimize its effects.

One thing you should know is that autism is undetectable before birth and the first expressions can appear a year or two after giving birth. This is why you as parents should recognize the early signs of autism as early as possible, because it can hit any child in different ways.

Early signs of autism are language delay, repetitive use of words or phrases in a normal setting, resistance to change and insistence on a single activity cycle, fondness of spinning objects, obvious fear of things, poor concentration, lack of sensory pleasure, detachment from the real world, and lack of interest in toys.

If you notice some of these signs, approach a doctor who can provide clear answers on the condition of your child. Then, if your child has been diagnosed with autism, provide your child with an early intervention program. The early preventive treatment is the best thing you can do to alter the effects of autism on your child. People who can give early intervention programs include pediatric psychologists, occupational therapists, developmental pediatricians, speech or language pathologists, and early childhood educators or special education teachers.

It must be reiterated that an early intervention program must be done as soon as your child is diagnosed with autism. Both therapeutic and educational services are significantly important to reduce the effects of autism. These programs will also help to prevent your child from developing problems associated with autism like repetitive behaviors.

Depending on the program and the case of your child, you can choose to enroll your child in either a special school that support students with autism, a regular school with normal students, or a private school that provides low student-to-teacher ratios in classrooms, giving each child with autism closer therapeutic and educational attention.

As a parent, you should be informed on how to deal with autism. This will enable you to help your child as he grows up. It is especially important for you to keep the following rules of thumb on how to interact with your child:

1. Let your child develop a sense of security and peace in your presence.
2. Develop routines in and out of the house. Rules on the expected attitude inside and outside the house must be made clear.
3. Don’t be restrictive but be strict. Make sure you restrict patterns that would worsen your child’s condition. No means NO.
4. Provide affection in as many ways as possible.
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Son or daughter

If your father or mother is autistic, this can lead to cumbersome situations. In general, more house rules are needed because the parent with autism tries to keep control by means of rules.

For children the most important issue is, however, that the parent with autism cannot always sense well what goes on in the child’s mind and thus the parent is not always able to give the child the support he needs. This can obstruct developing an emotional bond between the two. The child will receive only a few compliments given by the parent with autism, he or she will probably receive much criticism, and must consider the parent’s handicap all the time. This can lead to an imbalance in which the child more or less takes over the parent’s role. Moreover the non-autistic partner, most frequently the mother, will have extra tasks, as a result of which the child can also lay a lesser claim on this parent.

Having a parent with autism leads to a particular educating. Children must learn to accept that their parent is not the same as other parents. Raising a child lays a heavy claim on the autistic parent’s flexibility. Unexpected events are more or less common during the education and upbringing of children. Spontaneous sleepover parties, changes in plans, and not accepting parental authority seem to be a prominent part of educating children. These situations are very difficult for an autistic parent. 

Brother or sister

Siblings, too, face difficulties not present for their peers without autistic brothers or sisters. They find themselves faced with a sibling who may take little interest in them, demand a great deal of attention from parents, and exhibit embarrassing behaviors.

All of these concerns are legitimate. With the proper education, a common goal, and strategies in place to enable the family to appropriately cope, living with autism can be a very manageable situation.

Being a brother or sister of someone with autism means having to take into account your autistic brother or sister. This expands itself as time goes by to eventually taking responsibility for this brother or sister who can’t stand his or her own ground socially.

Because of this you learn to be social, but at the same time you get less chance to be a carefree child. This responsibility usually does not decrease when one grows older.

Requests from the parents to look after the autistic brother or sister are sometimes made directly and sometimes implicitly.

Most striking for someone with an autistic brother or sister is that much attention goes out to the latter; as a result they themselves get less attention, so they might end up feeling less important.

A second element that is notable is that the autistic brother or sister cannot play well with other children. The “playing age” lies much lower than the calendar age. Because children outside the family often bully or tease the autistic child, parents expect their brother or sister to compensate by tagging along with the autistic brother or sister. As a brother or sister you might not always feel like doing so.

For the child with autism, having a brother or sister means following a full time social development course by watching and listening to how their brothers and sisters perform.

This is very favorable for further development. Parents must, however, make sure that the brother or sister is not hindered in their own development and that they themselves receive proper attention.

A third element can be the difficulty in taking friends and boyfriend or girlfriends home, because they are also expected to consider the autistic brother or sister along with the other children.

A family of their own

People with autism can also found a family. This asks an extra effort from the partners, but can develop a deeper relationship. When there are children, however, autism often leads to problems, because a much larger effort is asked from the partners, and also because children tend to disturb the quiet autistic patterns.

Sharing domestic tasks is not easy for most men, but for someone with autism it is a still larger problem. Taking care of children is no simple thing. Women with a male partner have to adapt their expectations anyway because one might be less inclined or able to combine tasks, but with an autistic partner this even more strongly applies.

The upheaval which having a family brings is contrary to the slowing down/time out which someone with autism necessarily needs. As a result, the parent with autism will weigh heavily on the other family members, and the non-autistic parent will compromise to keep the peace.

A family means constant movement. It also seems hectic because there’s always a mess that needs to be cleaned up. There’s always someone demanding attention and things that need to be done immediately without the possibility of retreating for a moment or two.

The most difficult fact is that the person suffering from autism hardly has enough time for himself, and even if there is enough time, there are these continuous disturbances. This can lead to escalations with physical and verbal violence.

Relationships
A relation between people is always a work of art. The high percentage of divorces illustrates this clearly. Relationships in which one of the partners is autistic have a double problem, namely the effort to mold the relationship into something good, and difficulty in understanding what a partner with autism brings along. Forming a relationship means a transition from quickly understanding each other in the courting phase, through a phase where you discover you might not know and understand each other as well as you thought as in the amorous period, to the process of nevertheless learning to understand each other. A relation means consideration for each other, sensing what keeps the other busy and trying to adapt your behavior.

In general with an autistic partner the ability to sense and flexibility toward behavioral change is lower than in people without autism. Broadly speaking the intention to adapt is larger: autistic people are mostly characterized by trying to do their best. However their willingness is much larger than their possibility. Because the autistic partner is concerned with seemingly unimportant things, the partner without autism has often difficulty believing this is inability rather than uncooperativeness.

Moreover, the partner without autism has limited possibilities for enjoying things together, such as going out to parties, because the partner with autism wants to avoid groups of people. The partner without autism must take over tasks and show more adaptive behavior than he or she may have anticipated at the beginning of the relationship, and this will be more than seems to be the case in other relationships. The positive aspects of the relationship, like honesty and loyalty, are large, but are at risk of being left out of the picture.

Often partners of people with autism are the first who cry out for help, because they feel overloaded or exhausted. They only have an eye for the negative aspects in their responsibility and sometimes say that they have the feeling of having an extra child, instead of a partner.

Frequently the autistic partner is the man. The female partner is often extremely sensitive, empathic and very verbally gifted. In fact, you will notice a pattern that you often see between men and women, but more extremely. By the time help is finally offered, the patterns in the relation have reached extremes. It frequently involves a very eloquent woman and a man whose spirit is broken.

The fight between the partners goes out of control because the partner with autism tries to understand what is said and sometimes takes it literally, or forgets, or isn’t able to focus on the emotional aspect. The man’s speech will frequently be overshadowed by the woman’s words.

The endless discussion to get clarity can drive the partner without autism nuts. She simply wants the other to be able to sense what’s going on and while she may be stronger in argumentation than the partner with autism, she might lose the argument while at the same time she feels she is right. The autistic partner however is not particularly interested in winning the argument, but is desperately trying to understand and as a result comes up with arguments which turns the conversation into a kind of debate instead of attempting to get clarity.

It can help to simply stop to the discussion and return to the good intentions of both which are usually there.

The partner without autism expects the other to share feelings and ideas. But for men with autism this certainly means asking too much. The woman expects the man to see that she does not feel 100% lately. For someone with autism this is quite difficult to notice and express.

Even for someone without autism it is often difficult to discover how the other feels and exactly what the other needs. This is more or less always the case in a man/woman relationship and even then it is not always clear for the non-autistic partner.

Being considerate of each other and sensing each other’s needs is of the utmost importance in any relationship. The part of the problem in a heterosexual relationship that is caused by man/woman differences is larger than the aspect added by the autism.
Autism At Home
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