Autistic Citizens Residential &
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Parent InformationOn this pageIntroductionThe development of a child with autism is a unique experience, no two children are identical, to simplify such a complex process, the developmental period has been divided into several key areas. Comments are made in relation to ‘autism’ and ‘Autism Spectrum Disorder’ (ASD) without any specific exclusions or inclusions. The following comments are general in nature and are based on many years of direct experience with children, adolescents and adults with ASD. Where possible web-site links have been included in the text, if they are useful remember to add them to your‘ favourites’ file. In general sites from the UK tend to be more traditional in their explanations and advise, the US sites being a bit more alternative. The Australian sites are informative in relation to services offered and support available and give solid information in relation to descriptions of the condition and it’s potential causes. Parents have more insight into their child’s strengths and weakness
than any professional, politician or bureaucrat. But these individuals
may have a lot to offer too, they can be very helpful at times of uncertainty
or distress. A successful way to advocate for your child is to be polite
but firm with your requests, ask for what you want and explore the options
offered. Talk with other parents, try to keep up to date with advances
or changes in the field, enjoy your time with your child and keep a sense
of humour, it will help a lot. 0-3 YearsSome parents will identify that their child was different from the first time they hold him or her, other parents will notice no difference from their previous children, only to realise milestones are not being met and perhaps identifying some odd mannerisms and interests developing over time. Still another group of parents report normal development for some period then a sudden loss of skills that are replaced by autistic type behaviours. These development patterns represent a conundrum for researchers and
clinicians (to say nothing of the parents feelings), autism does not appear
to have one single onset pattern, because of these different patterns
it was easy for the cause of autism to be blamed on a particular factor
in the child’s life. For a good overview of Autism Spectrum Disorders see: http://www.autism-watch.org/general/nimh.shtml a US based site. During the 1960’s and 70’s the first to be blamed were the parents themselves for supposedly not providing a loving enough environment for the child. Now thoroughly dismissed as the product of poor research and possibly self-serving psycho nonsense this then common notion left many parents with guilt they neither needed nor deserved. Even criminally negligent and abusive parents cannot cause autism. Parents do not cause autism, nature is the most likely culprit. Many ‘professionals’ at this time made a good living from counselling parents and exploring their feelings in the name of family therapy (or whatever). Fix the relationship with the child and the autism would disappear was the catch cry, but it simply didn’t work because the basic premise was so wrong. This was probably one of the first examples of parents being exploited by the propagators of false, misleading or badly researched ‘cures’ for autism. Sadly this was not the only example of a misleading or inappropriate therapy nor would it be the last. There has been considerable interest in the media over recent years to do with the Measles Mumps Rubella (MMR) inoculation. The popular view is/was that the link between the development of autism and MMR is/was a very strong one. The most recent research this author was able to find questions this view. See: http://www.planetark.com/dailynewsstory.cfm/newsid/27078/story.htm but check MMR in google (or similar) for some interesting information. However the notion is still very popular in some quarters and there are several web sites worth exploring. http://www.mmrthefacts.nhs.uk/http://www.mmrthefacts.nhs.uk/ There are currently several other common notions in relation to the cause
of autism. As the purpose of our site is to provide information the following
links are provided for the reader to view and consider. Most children who develop autism will be showing the signs of the condition
by the age of three, although the diagnosis may, for numerous reasons,
not occur until some time later, The Diagnostic and Statistical Manual
definition is used widely as a source of information in the diagnostic
process. From 0-6 years the Department of Human Services is the main agency for the support of you and your child with autism in Victoria. Check their services at; http://hnp.dhs.vic.gov.au/wps/portal In Victoria there are several centres for diagnosis of autism. In order
to maximize the availability of services and support offered it is advised
that formal diagnosis of the child be undertaken at one of these centres.
http://www.med.monash.edu.au/psychmed/units/devpsych/actnow/project.html
the site has some excellent information, also see: http://www.autismvictoria.org.au/services/getting_assessed.php#teams 4-6 YearsDepending on the age at which the child is diagnosed it is common for some form of intervention or assistance to be sought by parents after the diagnostic outcome is known. Around 4-6 years of age is often the first opportunity for a child to receive such support. This may, depending on the financial circumstances, beliefs and location of the child be an autism specific early intervention service, an Applied Behaviour Analysis (ABA) program, a visiting consultant to the child’s kindergarten or contact with a private professional. http://www.autismhelp.info/htm/links/services.htm#1 a good summary of a number of interventions is also found at http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=297 The 4 to 6 age period is the time a child generally prepares for the school years ahead, it is advantageous for the children to be able to mix, pay attention and generally look after themselves. These skills will help the child considerably in any school setting. Sometimes, during this period, a child may begin to interact or speak for the first time, obsessional behaviours may take on a more practical bent (books and reading, collections or music for example) and the child may begin to become more attached and socially interactive within the family. This is the result of the child’s development coming along, albeit some time in arrears of his/her age peers. For some, these milestones will come later and other children may never master speech or complex social interactions. Some of the most content and happy individuals I have ever met are amongst this latter group. We all have to work toward helping the child with autism to do the best with what they’ve got. Many children with Asperger’s type ASD will still not be diagnosed
at this age as their development is often less overtly different from
age peers and the development of language will have been (probably) within
regular bounds. Primary School YearsSome children with ASD will successfully attend regular primary school without extra support being required. The majority of children with autism will need some assistance, this maybe in the form of a classroom aide, modified curriculum or the like. To check information regarding children with disabilities and their support in the Department of Education and Training see: http://www.sofweb.vic.edu.au/wellbeing/disabil/index.htm Some parents regard autism specific schools as the best option for their child. There are several such schools in Victoria and further information may be found at; www.autismvic.com.au/ or http://www.autismhelp.info/htm/links/services.htm#1 A reason for the choice of a specialist autism school is the extra concentration of expertise and interest in ASD by the staff and management, this enables the specialist school to be as up to date as possible in teaching and training techniques with consequent beneficial flow-on to the students. The downside, if there is one, is that the similarity of the student’s needs tends to limit spontaneous social interaction somewhat. Special schools can be a great option for many children with autism too, some have a real and well developed interest in ASD and have made this condition somewhat of a support focus for the school. Some contact points are to be found at the above sites. Best idea is to check with your local schools and ask around or call one of the support groups again listed above. Other education options include private special schools and Steiner based education. Home-based education is not, in this author’s experience, a common option in metropolitan areas. Informed parents will recognise the environment that will suit their child best, so no matter which way you may decide to go with your child’s education be confident in your decision. Students in the regular primary system are often very supportive of their classmates with ASD and friendships may develop. It’s somewhat unusual for these school-based friendships to continue long into the secondary school years, especially beyond year 8. The developmental disparity, especially in the students’ social development, appears to become too great. Parents often concentrate on the 3R’s of primary education, but also consider the development of life and leisure skills. If possible get your son or daughter to contribute in some way to the management of the household chores. Whether it be making a bed, setting the table or putting away the knives and forks all these and similar activities are helpful and promote a sense belonging to a cohesive family unit. Activities such as swimming, cooking, playing music, bike riding and sports generally are skills that assist the child develop a sense of self worth and promote self-esteem. This type of activity often produce fun family times as well, which is good for the child’s siblings, as it may increase their appreciation of their sister or brother with autism.http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=121&a=2209 As a child with autism will not easily take to changes in routine, it is often best to schedule activities into the regular household timetable. If changes must occur, give the child advanced notice and explain the reason for the change in concise language he/she will easily understand. For the child with a more substantial impairment in intellectual functioning a concentration on the development of hygiene and self-help skills (toileting, teeth-cleaning, washing and showering, dressing and so forth) is most worthwhile. The ability of the child to behave, in what is generally considered an appropriate way, in shops, cars, on public transport and in other people’s homes is most worthwhile. These activities provide opportunities for incidental social interactions, new experiences and may lead to the development of a range of skills and interests. A parent may wish to go out for hours shopping, better to start small and be come home on a successful note. Plan trips, increasing either complexity or duration each trip, not both.
Many children with autism will find certain situations very distressing,
places which are crowded, noisy, unpredictable and visually confusing
should be approached with caution. Smells can also cause the child with
autism distress. Over time the child may well learn to cope in these environments,
progress may be slow but you’ll both get there in the end. Secondary School YearsDuring this period the changes in the child are most significant. It is a time of transition from child to adult, from a dependent to a unique individual, from a cute kid to an often rangy, pimply teenager, from the recipient of interest and compassion to the subject of the cold shoulder and ignorance. Not only are there changes to the mind and body of the adolescent but also changes in attitude from family, teachers and the community. The physical changes, which will occur, are well understood, with these come an awareness of or at least an interest in the sexual nature of the body. Masturbation, menstrual management and attraction to the (usually) opposite sex or potential sexual exploitation are amongst the most common concerns for parents. But the desire for independence and the anxiety associated with all the changes in their body and life, as indicated above, are also major issues for the adolescent with autism. Frequently these feelings are very difficult for the person with autism to express and it is often up the parents to recognize their concerns and proactively manage them in conjunction with their son or daughter. Professional support is sought by some parents to assist in this process. The secondary system is very different from that in the primary. Schools in the regular system are often larger and organized in a less structured manner, reflecting the development of students, more independence and self-dependency is expected. For students with autism this may cause some difficulties. School finishing early, for example, may be a blessing for most students, for the person with autism it represents an unexpected change, without a contingency plan in place it could lead to anxiety and a behavioural outburst. Whilst there are fewer autism specific options available in Victoria for secondary aged students the special school system is extensive and often provides a good alternative for many students with autism and a degree of intellectual impairment. Social interaction and social opportunities in these schools may provide the student with autism chances to mix and develop friendships with a range of peers. The author knows of many life long friendships established at special school. For more information about the education system in Victoria; http://www.det.vic.gov.au/det/ As with any adolescent the mix of freedom and independence offered by the parent/s and that expected (or demanded) by their child is a contentious point. Having exposure a variety of experiences in earlier life becomes a distinct advantage during this stage, The development of the skills associated with independence can be taught just like any other skill. The role-playing of greetings and other social situations, writing predictive scenarios (what may be experienced at the football, for instance) and working out reactive strategies, developing contingency plans, for example, what to do if the friend doesn’t turn up on time and doing a ‘dry-run’ prior to the trip are all simple but effective ways of helping the person with autism enjoy a safe and predictable outing. A steady decrease of intrusive parental (or teacher) supervision together
with carefully selected activities seems to be a key in the successful
management of these activities. Some adolescents with autism will be aware of their condition and use it as a ‘brand’ by which they excuse themselves from the world around them. Obsessions and rituals may become overwhelming if not tempered with some reality checks. The comfortable life the teenager enjoys in the family comes at a price and that is being a pleasant, active and contributory member of the household, yes this is an ideal, but setting limits early on will mean this expectation comes as no surprise (even if it is bucked to the hilt) to the teenager. As the adolescent gets older those attending regular secondary school may experience difficulties with the regular curriculum. Change in the emphasis in the type of learning expected, as students head toward the latter years of school, requires a change from information based learning to a more integrated, problem solving approach. Science/Maths based subjects appear to the better choice for many students at this level. Modification of curriculum expectations may be worthwhile discussing with the school, some students may gain, for instance, time extensions for exams and set work or the subjects required may be taken over a longer than usual period. Talk with the school about what you and your son or daughter thinks is best for them. Most students in the special school system tend to stay at school until the age of 18 (in Victoria). Those that leave this system do so because of behaviour related issues. The difficulties involved in having a teenager with behaviour issues at home during the regular school year are most significant to most families. There are usually few support options available. Discuss matters with the school and try to ensure all options are explored most thoroughly. Don’t be worried about going over the head of the school principal directly to the regional office, or further up the food chain, to make sure all the supports available to your son/daughter are at least discussed. For some students the pressure of school may become too great or they may leave school for other reasons. This can become a real problem, as often the teenager becomes increasingly detached from the regular home/community routine, it is not uncommon for their period of activity to switch to night hours with very long sleep-ins. Frequently the internet and computer become the only source of interaction. The prior establishment of routines and expectations together with limitations placed on certain activities may assist. Depression and anxiety are commonly associated with this period of life, thus, the need for professional assistance is worth considering. This does not necessarily mean the prescription of medication, some excellent ‘behavioural’ options are available also. So now we’ve gone from the early years to the 18 year old, with
a lot of planning, a bit of luck and a whole load of hard work on behalf
of all concerned the teenager will be well prepared to undertake the big
challenge of adulthood. Adult YearsNow being finalized, bookmark and come back soon. |
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