Tag Archives: parenting a child with autism

Autism Awareness Month: Parenting a Child on the Autistic Spectrum # Story 3: The Wilkins Family–A Step Parent’s Story.

188974_210144349012735_4390559_nThe Wilkins family; Kirsty, Mark and Connor(4). Kirsty separated from Connor’s father when he was small. Kirsty and Mark lived in Local Authority housing and were expecting a child together. Connor received a diagnosis of autism at the age of 3 years 2 months. A home tutor visited the home for 2 sessions per week focusing largely on behaviour and communication.  Connor attended full time nursery in a specialist nursery school with a support worker.

Causes of Stress

Kirsty had no experience of parenting a child without ASD thus it was difficult to say whether or not it was more or less stressful.  Parenting any child was difficult but when she compared him to other children his behaviour was better.

“I wouldn’t change him for the world, it (autism) is part of him, part of his characteristics.”

The only aspect that she found more difficult than parenting a ‘normal’ child is that he required more supervision because he had no sense of danger.

1. Communication/Understanding

The majority of Connor’s difficult behaviours stemmed from communication problems. Connor understood simple sentences and commands and spoke in short phrases, though some of it was difficult to understand. Kirsty found it frustrating that he didn’t understand what she was saying and that she couldn’t always understand him. His language improved since attending nursery full time and having input from speech therapists, a play worker and tutor but Kirsty still found it difficult.

Connor’s lack of understanding meant he would do things that were not allowed but had no concept of why it was wrong.  He would take food from the fridge just before mealtimes or play with the toilet and bathroom products.

They couldn’t ask him what he was doing because he was unable to answer; they had to go into the room to check what he was doing.

“With a ‘normal’ child you can say don’t touch that and they will say ‘why?’. With Connor you say it is hot and he has to touch it to find out what hot means”

As Connor’s understanding improved and he was able to ask for things he became a much happier child and therefore family stress reduced.

2. Disobedience

Mark didn’t find Connor’s behaviour stressful, but the effect that this had on Kirsty was.   Kirsty felt that there were a number of behaviours that Connor only displayed for her,

“He is like any kid, he will play up for his mum”.

This included running away and when Kirsty said ‘no’ to him he treated it as a game,

“Sometimes I feel like I am always yelling at him, I know it’s not his fault but then I feel stressed because I feel guilty for yelling at him….it’s a no win situation”.

Kirsty also acknowledged that if Connor started the day badly this affected her stress levels all day. If she began the day badly, small things caused her stress that wouldn’t usually.

Mark and Kirsty felt that Kirsty’s family had a tendency to give in to Connor and allowed him to do things that they wouldn’t normally allow. They feel that because of this it was difficult to set boundaries for his behaviour.

3. Going to Public Places

Going anywhere outside of the house was particularly stressful for Kirsty. She didn’t drive and anytime she walked Connor anywhere he would run away and has no road sense.  Kirsty avoided going places on her own. Kirsty’s mum would take Connor out because she had a car and often had Kirsty’s sister to help.  His behaviour improved, he stopped wearing reins and would walk around shops without running. The difficulty for Kirsty was getting him to the shops in the first instance.

4. Concerns about the New Baby

Kirsty worried that when the new baby was born Connor would regress. He liked to imitate babies and animals therefore the family worried that he would want to wear nappies or have a dummy like the baby. The family prepared him for the baby by talking to him, involving Connor in shopping for the baby and decorating the baby’s room. Nursery,his tutor and play worker also encouraged  imaginative play using baby dolls.

Coping Strategies and Support
1. Support from Professionals

Kirsty felt that all professionals were extremely supportive. Since Connor attended full time nursery his understanding and behaviour improved significantly. He developed many good habits such as eating different foods and sitting still for a period of time. Having a tutor and play worker come to the home  helped Connor to cope with new people. In the past he was frightened of people outside of the family but he became more sociable. Kirsty also found the tutor valuable as a source of information. Mark felt that if Connor continued to progress at the same rate as he had in the last 6 months then they would not have any significant worries about his future.

2. Support from Parents

Kirsty felt able to turn to her mum for advice and as a primary school teacher she often had useful strategies. Kirsty’s mother looked after Connor overnight every Wednesday; this gave Kirsty a regular break, which she found particularly helpful.

A Wish List for the Future

Kirsty and Mark couldn’t recommend any further/ different support as they valued all the help they got from professionals. The only thing that might help slightly would be for Kirsty to be on her own less so that when she was feeling stressed she could take a few minutes to calm down without being in the heat of the situation.

Story 2 is a Single Parent’s Perspective and Story 1 Taking Time off Work

Disclaimer: all names are pseudonyms.

Autism Awareness Month: Parenting a Child on the Autistic Spectrum # Story 2 : The Simpson Family–A Single Parent’s Perspective

autism awareness monthThe Simpson family are Leanne, Chloe (age 6) and Robert (age 3). Leanne separated from the children’s father before Robert was born. Robert received a diagnosis of autism when he was 2 years 4 months. The main concerns at this time were communication and social interaction. Leanne also felt that she needed a lot of information because she knew very little about autism. Robert attended pre-school for 5 mornings per week supported by a tutor, a tutor also visited at home.

Causes of Stress

Leanne felt that parenting a child with ASD wasn’t significantly more stressful than parenting any other child but different things caused her stress. The knowledge that he would always be autistic in particular changed the way she thought about things.  Once she knew that he was autistic she felt unable to allow him to be content to do his own thing, there was pressure  to ‘get him to do things’ so that he would reach his full potential’.

  1. Smearing

Robert as a very tactile child  often sought sensory stimulation, including tickling, walking on bricks and exploring paint, water and sand with his hands. Often, when he had dirtied his nappy he would play with the contents and smear it over the room. This usually only occurred when he was on his own. At night Robert wore an all in one pyjama suit with the fastenings sewn together so that he couldn’t  get his hands in his nappy. This worked well,  and Robert stopped smearing every night. Leanne felt that bathing him after an incident was offering him a reward because he enjoyed baths. Leanne avoided  this and instead made minimal fuss and put Robert in the shower (which he disliked).

The most stressful aspect of this behaviour was that it had to be dealt with alone. Leanne felt that school would help with other things, like communication but this was primarily a home problem.

2. Communication

On the whole the most stressful aspect of parenting a child with ASD was communication.

“Smearing is the most stressful thing day by day but communication is the most stressful thing on the whole”

Robert’s inability to communicate was less stressful than his inability to understand. It was often possible to guess what Robert wanted or offer alternatives.

Robert’s communication improved significantly since his home tutor first became involved. Initially Robert’s only form of communication was to push Leanne towards desired objects.   A picture exchange system (PECS) was introduced to enable Robert to exchange a picture for a desired object. Initially this was very difficult for Robert to grasp and although he was able to pass one card to an adult he could not make a choice between 2 or more. Eventually Leanne discovered that he was interested in fridge magnets, the pictures were mounted on magnetic strips and placed on the fridge. Desired objects were placed out of Robert’s reach and each time he would reach for something Leanne would ask ‘What does Robert want?’ whilst signalling to the pictures. Robert quickly learned to pass the correct picture spontaneously. Robert developed a wide range of vocal sounds and used some words in context including ‘go’ and ‘again’.

3. Going to Public Places

There were 2 difficulties when taking Robert to public places: –

  1. Throwing himself on the floor and refusing to walk .
  2. Grabbing things from shop shelves.

Robert had a large pushchair that was generally used when Robert went out. This enabled Leanne to visit a variety of places that would not otherwise be possible. However, Leanne was anxious that as he got older it would be less appropriate to take him out in a pushchair. When Robert was expected to walk even short distances (e.g. from the car to his sister’s school) he would drop to the floor and refuse to move. Leanne’s main strategy for dealing with this was to walk away and wave good-bye, Robert usually responded by following. When this didn’t work Leanne tried to make it into a game. Robert enjoyed playing ready, steady go games and running on the word ‘go’. The game was used to encourage him to walk.

4. Impact on Siblings

Chloe was old enough to be aware that Robert was autistic but Leanne found  it difficult to explain things to her in a comprehensive manner,

“Only the other day she said ‘if I was autistic Robert wouldn’t be’, which is quite hard.”

As a single parent it was also difficult to go to places that Chloe would like to visit. Leanne found it difficult to cater for both of their needs.

5. Diagnosis

The diagnostic process in itself was not stressful but Leanne felt that her health visitor/doctor did not prepare her for a diagnosis of autism,

“When they were asking me questions that I know now was to do with autism, nobody mentioned to me at all; it could be this, which meant that when I did go to the paediatrician and they said it probably was autism it shocked me”.

Leanne would have liked to have been prepared for the possibility so that she could have found more information.

6. Nursery and Schooling

Finding the right nursery place for Robert was stressful for Leanne. Robert was offered a place at a specialist nursery from September but in the meantime Leanne felt it would be valuable to attend a local pre-school to see how he would interact with other children. Many of the pre-schools she visited didn’t feel right, as it seemed they had no experience of autism and were less than enthusiastic about taking him. On the contrary Hawthorn’s pre-school had experience of autism and appeared very flexible in their approach.

After a few weeks at the pre-school Leanne became worried because nursery workers gave comments that they were unhappy about Robert attending without a support worker,

“Hawthorn’s was a complete nightmare that really did stress me out…knowing what I do now I wouldn’t have put him in that school”.

With time and negotiation Leanne felt more comfortable about Hawthorn’s but feels that it was an unnecessary burden.

Leanne was also worried about choosing the right school for Robert; she felt that ultimately it was her decision but that it was a huge weight on her shoulders,

“If you get the right school and the right help then wherever he goes in life that will help him get to the highest potential, because that will be the majority of his learning.”

Coping Strategies and Support

1. Professional Support and Information

The Support Leanne had from professionals was particularly valuable, the most notable of these being his home tutor and the Early Bird course. These helped share information about autism and suggested strategies for dealing with problem behaviour.

Leanne had a particularly good experience with her Early Bird group. The group of parent’s bonded particularly well and they continued to support one another and meet socially both with and without their children.

The most important contribution from the home tutor was the introduction of PECS. Leanne felt that she needed to be taught from scratch how to communicate with Robert and the regular contact with the tutor helped. They also helped Leanne to see what Robert was capable of,

“Before I used to say he is never going to do that, it’s taught me not to think that way”

Having someone to talk to on a regular basis, particularly someone with knowledge of autism and experience with other children was invaluable. The flexibility of the early intervention programme and informal relationship with the tutor meant that there was no pressure,

“You feel like you aren’t on your own”.

2. Support from Friends

Leanne’s close friend Helen had a child slightly older than Robert who was also autistic. They spent a lot of time together both with and without the children. Leanne often telephoned Helen when she was having a particularly stressful time. Helen had first hand experience of autism and the practical advice she gave was refreshing,

“I don’t want to hear ‘aah’, I want to hear ‘yes I’ve been through that as well’ ”.

A Wish List for the Future

Leanne would like to continue having someone help her develop strategies for dealing with Robert’s behaviour.

If Leanne could have any additional help the most useful thing would be to have a regular break.  Someone looking after the children for one night per week would give Leanne something to look forward to.  It would be important that she could trust the person caring for her children, being sure they were safe would help her relax.  Leanne felt  support of this kind was lacking, her parent’s would baby-sit but never have the children overnight.

“ If you don’t have anything to look forward to it is a constant thing. If you’re having a bad week, which you do, and your child’s having a bad week as well you can see no end to it.”

As a single parent this is particularly important. Single parents are more likely to require  respite care and support from other families.

Story 1 : Taking Time off Work Story 3: The Step Parent’s Perspective

Disclaimer: all names are pseudonyms.

Autism Awareness Month: Parenting an Autistic Child # Story 1:The Evans Family.

autism awareness ribbonBefore I had my own children I had a really rewarding job, working with families with pre-school children on the Autistic spectrum. As a parent myself, I now appreciate even more how challenging life was for these families and how valuable it must have been to have someone regularly visit their home to offer respite, problem solve together and help the children develop.   My Masters dissertation  investigated stress and early intervention in families of pre-school children with Autistic Spectrum disorder. The following stories are taken from case studies used in my dissertation.This is the first of 3 posts telling different families’ stories of the stresses they encountered and strategies for coping.

The Evans Family

The Evans Family are James, Rebecca, Charlotte (aged 8) and Alex (aged 4).  Rebecca hadn’t worked since Alex’s birth and James was taking 9 months unpaid leave with the intention of returning  when Alex started school. Alex received a diagnosis of Autism at the age of 2.

Causes of Stress

Sleep

The most prominent and on-going issue for the Evans family was sleep. When Alex was first diagnosed, he slept for between 2-5 hours per night and would wander around being quite destructive during the time that he was awake. Medication (melatonin)  helped tackle his sleep problems. It took a while to get the dosage right but eventually the correct level was maintained.   Before this point, stress levels at bedtime were extremely high. James didn’t feel able to go out for an evening until Alex was asleep, which meant that he rarely did. Alex’s sleep improved with medication but was still very disturbed and unpredictable,

“For example he can still get up between 12-1am/2am/3am and be awake for anything between 30 minutes – 4 hours”

Charlotte was never a good sleeper, and just as she was beginning to sleep through the night Alex was born. Rebecca hadn’t had a full nights sleep for many years and this took its toll on her health.

Randall and Parker (1999)  found that the most common cause of anxiety and the most severe problem for parents of children with ASD was sleep. Parent’s also reported that many other stresses were associated with lack of sleep.

Unpredictability

The most stressful aspect of parenting a child with ASD for Rebecca and James was the unpredictable nature of everyday and the inability to be spontaneous.  With most challenges there were helpful strategies, for example using pictures to communicate but very little could be done to help unpredictability. If a routine needed to be broken, like needing his hair washed in the morning when he normally had a bath in the evening, it was extremely stressful.

Social Isolation

Social isolation is a major cause of anxiety for parents of children with ASD (Bristol 1984).

“You feel like you are on your own with the problem…. in a bubble……… .Most people know nothing about autism so you don’t have that thing where you talk about what your child has done….there is no reference point”.

Other people were interested in hearing about Alex’s history but talking about it was depressing for Rebecca and James. Meeting children of the same age as Alex was upsetting. Not only did they ask questions about Alex’s inability to do things but seeing children do the things that Alex was unable to was difficult..

As Alex got older, social situations  became more difficult.People began to question why he couldn’t talk and explaining to people all the time was tiring. Doing things as a whole family was difficult therefore they would often do things individually with Charlotte so that she was not left out.

Socially there was a marked difference between the 2 children. Charlotte would have friends to stay and then they would return the favour but this never happened with Alex, the lack of respite was an added stress.

The Educational Statementing Process

This was a significant source of stress to the Evans family, however they felt that their experience was not nearly as bad as other parent’s they had talked to. They disliked that the child was viewed in monetary terms and when the statement was explained, the  LEA reiterated the monetary figure. Rebecca and James felt that explanations of the actual support available would be more valuable.

Coping Strategies and Support

Structure and Visual Prompts

Having a clear structure to each week helped with Alex’s behaviour, ensuring he knew where he was  going each day and keeping routines the same. A structured visual timetable depicted what would happen, using pictures and photographs of the places and people he would visit. It was also used for main parts of his daily routine such as bath time and bedtime helping Alex to understand what would happen next.

Information and Learning from Experience

The family’s experience of stress changed over time. A number of behaviours that were particularly difficult when Alex was younger stopped as he grew older, for example screaming and head butting. The change in behaviour was partly attributed to growing up  but also as time went on the family understood  the things that affected Alex’s behaviour. For example, in the past Alex’s parents were inclined to coax Alex to eat food or wear clothes that he did not want to but have learned that this achieves nothing. Rebecca learned through reading literature about autism that certain textures of clothing could feel like sandpaper on the skin. She quickly recognised that wearing an item of uncomfortable clothing could be a trigger for a bad day,

“Now if he scratches even a little bit when he puts his clothes on, I take it off straight away.”

Patience

Learning to be patient was a huge asset to the Evans family.  They built up Alex’s confidence before pushing him a little harder,  using visual and verbal prompts and waiting for a response before the information was given for a second time. James and Rebecca acknowledged that being patient was much easier when they didn’t need to be anywhere important.

 Reducing Work Commitments

James decided to take a break from work to help with the family; this would not be an option for many families but it had a huge impact on the life of the Evans family.  Life became more settled for Charlotte as  she could regularly be collected from school by the same parent. In the past this had been difficult because of Alex’s unpredictable behaviour. For Rebecca the biggest relief was sharing the responsibility of attending meetings and completing paperwork. It also meant that when paperwork needed to be done Rebecca could focus her attention on this whilst James dealt with everyday routines.

From James’ point of view, of all the support and coping strategies employed this reduced stress levels more than anything else,

“Often I would have to go out leaving Rebecca with Alex knowing that she was really ill and he was being in a right state” James found it difficult having to explain at work what was happening. There was a financial impact for the family but this was significantly outweighed by the benefits.

Support from professionals and friends

The most valuable professional support came from the people at the top (e.g. consultants) and those that worked with Alex on a regular basis (e.g. early intervention tutor, nursery staff). The consultants were particularly good at helping Rebecca and James get in touch with services and moving things along quickly. The NAS Early Bird programme helped provide initial information about autism. They felt that some professionals (mostly those that saw Alex less regularly) would not be missed if they no longer had contact with the family.

Friends were an important source of support and it helped to go out without having to talk about autism. Meeting other parents of children with Autism meant experiences could be shared without the need for explanation.

Focusing on the present

Rebecca stressed the importance of dealing with short-term problems and not worrying about the long term. This took some adjustment for Rebecca as a natural forward planner. She felt there was little point in focusing too much on the future because they couldn’t know what would happen or what Alex would be like.

A Wish List for the Future

Rebecca and James had elderly parents so felt it was unfair to ask them to babysit, this meant there was very little respite.They would love to have a number of options for respite e.g. in the home or in another venue. They felt that respite was not offered; but was available only on request. The options of what is available were unclear,  and they felt it would be helpful if a certain amount of funds were allocated and a number of options presented for consideration. Finding babysitters for an autistic child was very difficult, his support tutor was invaluable as when she baby sat they could go out knowing that she knew Alex well and would be in control.

Rebecca and James would like additional input from a speech and language therapist. As Alex had no spoken language they assumed that he would get maximum input from a speech and language therapist. They felt  the  level of involvement was insufficient and that children with some language got more hours than those with no language at all.

For her own sanity Rebecca was really keen to return to work full time once Alex was settled at school.  However, she couldn’t see how this would work unless James wasn’t working. As part of the conditions for James’ leave, he was obliged to return.  Returning to work in a new position would be particularly difficult; in an old post there would be more understanding of the family situation and therefore negotiation for flexibility. In a new post Rebecca felt it would be very difficult to have time off for meetings etc.

Story 2: The Single Parent’s Perspective Story 3: The Step Parent’s Perspective

Disclaimer: All names are pseudonyms.