Autism And The Family

A report by Melissa Hart of Guelph for her grade 12 class,
 "Individuals and Families in a Diverse Society",
at Our Lady of Loures High School,
 based on surveys kindly completed by mothers
whose children with autism who range in age from 4 to 36.

What is Autism?

             Autism is a spectrum disorder that affects social and communication skills. It generally is apparent during the first three years of life. Its effects are not the same in everyone. Autism knows no racial, ethnic, or social boundaries. Family income, lifestyle or educational levels do not affect the chance of autism’s occurring. It is four times more dominant in boys than girls. It is believed that as many as 1.5 million children and adults in America have Autism. Autism is not a disorder that can be “outgrown” but the symptoms often may lessen as the child develops.

 
Common Characteristics of Autism

  • Insistence on sameness; resistance to change
  • Difficulty in expressing needs; uses gestures or pointing instead of words
  • Repeating words or phrases in place of normal, responsive language
  • Laughing, crying, showing distress for reasons not apparent to others
  • Prefers to be alone; aloof manner
  • Tantrums
  • Difficulty in mixing with others
  • May not want to cuddle or be cuddled
  • Little or no eye contact
  • Unresponsive to normal teaching methods
  • Sustained odd play
  • Spins objects
  • Inappropriate attachments to objects
  • Apparent over-sensitivity or under-sensitivity to pain
  • No real fears of danger
  • Noticeable physical over-activity or extreme under-activity
  • Uneven gross/fine motor skills
  • Not responsive to verbal cues; acts as if deaf although hearing tests in normal range.


       For children with autism, sensory integration problems are common. Their senses may be over or under active. Some children are particularly sensitive to sound, finding even the most ordinary daily noises painful, others may be sensitive to light and need to wear protective glasses and some may be sensitive to touch and find that they are unable to wear certain fabrics or to keep their socks and shoes on.

 
What Causes Autism?

             Through brain scans, scientists have found that children with autism have abnormalities in brain structure and function. The scans show that they have different shape and structure. There are many theories to what causes autism but none have been completely proven. Some of the theories are; genetics; problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals; and vaccines. Children are born with autism or are born with the potential to develop it. Bad parenting does not cause autism; the children are not unruly kids who choose not to behave. 

 
The Effects of Autism on the Family

            The following is a collection of candid answers from five mothers of sons with autism. The children involved are 4 ½, 11, 13, 19 and 36. I found this to be an interesting range of ages.

Living Arrangements

All the children currently live at home. One exception is the oldest subject. He lived at home until he was 12. In 1980, before Special Education was compulsory for Boards of Education, the boy was placed in a residential school from age 12 to 21. He came home on weekends and holidays, so was home about half the time. Currently he lives in his own home where he tries to do all he can for himself and feels responsible. His mother spends most of her time in his home providing support and companionship and coordinating any other people who help him as support workers or volunteers.

Diagnoses


    Most of these families suspected their child had a disability by age 2 but usually diagnoses took 2 to 3 more years. Three out of the five families had other children with disabilities such as language difficulties; deafness; and math, reading, and writing challenges.

Major Adjustments for the Family

I asked the families that had older children than the autistic child, if the family had to make major adjustments when it became evident that the younger sibling was autistic. Most families underwent drastic changes in family practices and behaviours. Mothers in particular now found they were exhausted all the time and found it hard to function well. One mother commented that she loved to sing to her children but had to stop because her son would scream and go into fits. Everything had to have locks and be put away, nothing could be left out that could get broken. Some families had to change their diet. One mother said that her home lost the quality of relaxation that “home” implies. Attending appointments and having people coming to the house for evaluations were very time consuming and draining.

Communication

Most of us would agree that love and support are the backbone of the family with communication next in line. Communication varies drastically in autistic children. All the children in this report communicate with their families, some easier than others. The 4 ½ year old and the 19 year old both have normal speech. The 11 year old does not speak. He uses sign language to a certain degree, plus gestures. He understands what is said to him. The 13 year old does not communicate verbally but uses picture exchange symbols to make requests. He also uses gestures and a little bit of sign language. He understands what is said to him. The 36 year old has not spoken since the age of 4 or 5. He uses sign language, picture exchange symbols and facilitated communication (FC) which is most reliable for him. “FC involves a facilitator providing varying degrees of physical support, as well as emotional and communicative support, to the user of a communication aid.”  Macalester.edu. 2004.

Sibling Awareness and Interaction

In all of the families the children are very aware that their brother has autism. The siblings all spend quality time with their brothers. However, behaviour and health concerns occasionally limit activities for some. In one family siblings find it best to do things that he already has developed a level of competency. In another family where the autistic child is the youngest the children often play together on the trampoline, swim in the pool, sing songs with him and chase him around the house. The older two sisters often babysit him on their own. In another family the twin sister spent quality time with her brother when they were young but found it more difficult in their pre-teen and early teen years, but became good companions and friends later. His sister was a strong supporter and was proud of his efforts. She passed away when they were 27.

 When asked if the autistic child attended school with his siblings only one out of the five had. During difficult times in class the sibling was able to help out.

 In all these cases the mothers found it difficult to spend equal time with both the neurotypical children and the autistic child. The autistic children need so much more attention and care. All the families have both parents and they work very hard together to make time for everyone.

Autistic children often get help with outside services such as respite and home services. Generally this extra attention to the autistic child does not affect the other children in the house. In one family the siblings enjoy meeting and getting to know their brother’s workers. They appreciate the time that someone else watches and entertains him. Only one family said that they used to use services but currently found it too expensive and unaffordable.


        In all of these families the autistic child does do some household chores. Even the 4½ year old clears his dishes from the table and picks up his toys. The 11 year old occasionally wipes up spills that he has made but is usually not aware of messes that he has caused. This sometimes annoys his sisters when they are asked to clean up after him. Yet they are very understanding that he is not capable of helping with household chores. The 13 year old empties and fills the dishwasher; he has set the table in the past but with lots of supervision. The 19 year old helps out with many household chores. He can cook; do dishes, clean floors and dust furniture. The 36 year old sets the table and has developed more kitchen skills as an adult.

When asked if the siblings are comfortable having friends over to the house when their autistic brother is home, I got a mixture of answers. Most siblings had no problems when their brother was young. Those who experienced problems or embarrassments were usually in their teens. One because of some unusual behaviours, such as suddenly disrobing, whining, and sometimes becoming aggressive or violent. This boy is currently experiencing times when he is well and doesn’t behave like this at all but there seem to be a cycle so the other children in the family have to wait for those times to come around. One boy is very popular with his sibling’s friends as he shares an excellent knowledge of computers and electronics with them. When the oldest boy in this report was about 6 (1974), children were less tolerant of differences and disabilities and he was taunted by them making it uncomfortable for his sister to have friends over. Children were much less understanding than they are today.

Awareness and Interaction of Others

            Posing this same question to the mothers about their friends’ comfort levels with the autistic child, I also received an assortment of answers. Each case varied. One mother answered that she wasn’t sure but had never received a negative response from her friends. Another answered that some friends were uneasy and uncomfortable with the way he acts, as he is very loud and has a lot of energy. He can be overly friendly and sometimes will sit on people’s laps and some friends do not like it. In general, most of her friends take it in stride but don’t really interact with him. Another mother responded with “what friends, we have no friends and even family don’t come around any more”. This child has an aunt that has moved into the vicinity who has experience with these types of children but because of health problems she needs to be careful. The mother finds it nice to have her around, though it is not often. This mother finds that her friends tend to be other people that she meets through autism-related activities but they are more acquaintances than friends. Another mother also found that most of her friends were involved in autism support groups and planning services.

Family Outings

Family outings can be quite an ordeal for these families. In one family, one person usually stays home to look after the autistic boy or they get respite help when everyone needs to be away, as this boy gets very upset when we goes places he doesn’t like. Occasionally showing him pictures before hand helps. Another family always takes two vehicles, that way when they see behavour that indicates that he is breaking down one parent can leave. If not, it is likely that the boy will have a full-blown tantrum, which is often accompanied by violence and aggression. If they see signs of heightened autism before going out they will choose not to take him. Keeping a regular schedule of very well balanced meals and regular water along with his supplements and enzymes are a must.  The foods are specialty items and he cannot have the regular treat foods that children usually get on outings. This requires carefully prepared and packaged food before the trip and sometimes separating him from the rest of the children on the outing so that he doesn’t see them getting treats. Careful attention to this is imperative so that he doesn’t feel badly about this. He is aware of what treats he likes and it hurts when he sees the other children getting them. Another mother said that they avoid crowded situations where there are a lot of strangers. Their son prefers predictable surroundings where he has a safe place to go if he feels agitated. However in 2003 when he was 18 he was able to travel by airplane to Texas with the family with only his Gameboy and Walkman for safety.  The mother of the oldest boy involved in this report found family outings and holidays were very hard when the children were little. But once the children were in their mid twenties they loved to travel together with the family dog. He continues to love traveling though his special diet and sensory integration needs also means that they have to take a lot of stuff along. The youngest boy involved in this report has sensory issues but they can usually be dealt with at the time.


Support and Services

             All families agree whole-heartedly that there is not nearly enough support or services, from diagnosis to treatments to family supports made available to everyone. Raising an autistic child calls for extraordinary and super human resources. Access to early diagnosis is essential. ABA (Applied Behavior Analysis)/IBI (Intensive Behavioral Intervention) and discrete trial therapy/education needs to be made available to every autistic person/family that wants it. Parents would also like to have access to medical tests to investigate what is wrong with their child. Many autistic children cannot communicate how they feel or many do not even know what it feels like to be well. Full physicals should be available regularly to check for illnesses or pain they are coping with. This would help to alleviate a lot of negative behaviours.

             Financial issues can also be a major concern. Special services at home and respite are available but are very expensive and it can be hard to find good workers and families often go through long periods of time with no one available. One family says they only get two hours a week of home services. As autistic children need constant care and attention, two hours a week is hardly enough. Families often find that friends and family don’t understand and tend to draw away. With more knowledge given to explain autism the fear and rejection by others could be lessened.

             These mothers had great ideas and opinions on services they would like to see be made available. It was suggested by one mother that she would like to see a place in the community with trained workers where the kids could go and play and be accepted. A camp geared only for autistic children was also suggested. In Britain there has been discussion among political parties on a ten year plan to insure that every family that lives with autism will have its own support person who provides guidance as to how to get services from the system. There is a region in northern Ontario in which such as support person may be provided. This kind of help everywhere would make a great deal of difference. A great form of support that no longer exists started in the Guelph area in 1980. It matched “natural” families who had children with special needs with “host” families (in essence, volunteers that wanted to understand and be friends). They visited each other and built up friendships until the host family felt comfortable having the special child visit by himself overnight or for a weekend. It was wonderful as a humane and natural form of respite and also increased general community understanding of what it is like to live with special needs.

Advice to Others      

            All the mothers had great advice to give others, particularly those just finding out that their child is autistic.

  • Always remember that autism is just a label and it is not who the child is.
  • Take every bit of help you can get but be realistic. Not every therapy helps every child.
  • Get support immediately and look into all aspects of therapies that you feel comfortable with.
  • Do not give up!
  • Get ABA therapy right away if you can regardless of the costs – it will pay off in the long run.
  • Make sure you get complete medical and nutritional profiles done on your child.
  • Document everything. Be carefully what you sign (particularly institutions such as schools).
  • Don’t make you child your life’s work.
  • Have fun in whatever way they are able to.
  • Work hard with your child but have some fun along the way.
  • Don’t become obsessed in trying to make your child better. They will progress however far they are meant to.
  • Don’t rush your child or yourself and above all do not blame your child or yourself.
  • Never feel like a failure. We can only give what we can.
  • Educate yourself.
  • Meet other parents. Find out how they handle things.
  • Keep in close contact with your case manager.
  • Stand up for yourself and your child.
  • Research at your library and see what others have found that helps.
  • Participate in the research that is going on.
  • Love and believe in the child beneath the autism.
  • Find ways for the child to express himself/herself in whatever forms it takes.
  • Find and cherish true friends for the child with special needs and for the family.
  • Plan time with your other kids. Set aside a date even if it is with one parent once a month.
  • Take care of yourself.

Conclusion

            Autism affects families enormously. They are challenged physically, emotionally and financially. Everyday things that most of us take for granted have to be carefully planned and executed. It affects the social patterns of the families and friends.  More support through government agencies and community services are necessary. Better understanding through education for friends and families should be more available. Autism is a life-long disorder and help needs to be available and affordable from childhood to old age. Every human life is something to cherish.