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Autism Spectrum Disorders: Online Resources for Parents

Autism Spectrum Disorder/Asperger Syndrome Information—

1.      Articles on Asperger Syndrome
http://www.specialed.us/autism/asper/asper11.html
2.      Asperger Syndrome Information for Teens
http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=243&np=293&id=2320
3.      Australian Autism Education & Training Consortium-Provides details about workshops and information sessions for parents/caregivers of school-aged children who have autism). www.autismtraining.com.au
4.      Autism Advisory and Support Service
http://www.aass.org.au/
5.      Autism Awareness
http://www.autismawareness.com.au
6.      Autism Help Info-Webpage to help professionals, teachers, to understand and support the inclusion of people with ASD. Website funded by The Department of Human Services in Geelong, Victoria, Australia (Barwon South Western region).
http://www.autismhelp.info/main.htm
7.      Autism Help-A wealth of information and on a range of topics relating to  autism and Asperger syndrome)
http://www.autism-help.org/
8.      Autism SA-Information sheets on topics such as challenging behaviors, communication skills, coping with change, strategies for supporting students with autism in the classroom) http://www.autismsa.org.au/html/strategies/infosheets.html
9.      Autism Speaks
http://www.autismspeaks.org/
10.  Autism Spectrum Australia
http://www.autismspectrum.org.au/a2i1i1l445l487/welcome.htm
11.  Carol Gray’s website-Founder of Social Stories and educator in ASD
http://www.thegraycenter.org/
12.  Children, Youth and Women’s Health Service, Parenting and Health, Child and Youth Health
http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=114&np=306&id=1944
13.  Information on Asperger Syndrome that is easier for kids to understand
http://www.cyh.com/HealthTopics/HealthTopicDetailsKids.aspx?p=335&np=287&id=2339
14.  Mark LeMessurier
http://www.marklemessurier.com.au/
15.  Monash University -Evidence-based research, as well as information sheets that provide strategies relating to various developmental areas, including communication, social skills and motor skills. http://www.med.monash.edu.au/spppm/research/devpsych/actnow/factsheet.html
16.  OASIS: Online Asperger Syndrome Information and Support
http://www.udel.edu/bkirby/asperger/
17.  Positive Partnerships: online education about ASD for parents
http://www.autismtraining.com.au/public/index.cfm?returnTo=%2Findex.cfm
18.  Printable handouts
http://www.superduperinc.com/Handouts/Handout.aspx?src=H# (great handouts that are easy for parents to read)
19.  Rainbowland Autism Services
http://www.rainbowlandautismservices.com/
20.  Raising Children Network-Specific support for parents raising a child with an Autism Spectrum Disorder
http://raisingchildren.net.au/children_with_autism/children_with_autism_landing.html
21.  Simon Baron-Cohen-Leading UK expert on Autism Spectrum Disorder
http://www.autismresearchcentre.com/arc/staff_member.asp?id=33
22.  Sue Larkey
http://www.suelarkey.com/
23.  The Disability Information Resource Centre
http://www.dircsa.org.au/
24.  Tony Attwood-Leading Australian expert in Asperger Syndrome
http://www.tonyattwood.com.au/

Counseling Services—

1.      Department of Education and Children’s Services Helpline
Ph:  1800 222 696 or Disability Services Level 6 Education Centre 31 Flinders Street, Adelaide SA 5000 Email: candice.hargrave@sa.gov.au Ph: (08) 8226 0546
2.      Kids Helpline
http://www.kidshelp.com.au/index.php
Ph: 1800 55 1800
3.      Lifeline
http://www.lifeline.org.au/
Ph: 131114
4.      Parent Helpline-A service of Children, Youth and Women’s Health Service, 24 hours a day, seven days a week providing telephone information, counselling and support. Available for parents of children and young people from birth to 25 years, also to those people working with children and young people.
http://www.parenting.sa.gov.au/helpline/
Ph: 1300 364 100
5.      The Second Story Youth Health Centers-Counseling and support available for Youth
http://www.cyh.com/SubContent.aspx?p=190
6.      Youth Healthline-The Youth Healthline is a 24-hour, 7-day telephone service for young people aged 12 to 25 years in South Australia
Ph: 1300 13 17 19
http://www.cyh.com/SubContent.aspx?p=187

Diagnosis and other Support Services—

1.      Autism SA
http://www.autismsa.org.au/html/about/services.html#diagnostic
Autism SA Info Line on 1300 288 476
Autism SA Info Line can also provide you a list of Private Practitioners.
Medicare rebates are available for diagnostic assessments of children under 13 years.  For more information contact the Autism SA Info Line on 1300 288 476 or Medicare 132 011.
2.      Flinders Medical Centre
Ph: 8204 4433
http://www.flinders.sa.gov.au/womenandchildren/pages/paeds/AAL_PDAz_A
3.      Inclusive Directions
http://www.directions.org.au/
4.      Lyell McEwin Health Service
Ph: 8182 9379
http://www.lmh.sa.gov.au/public/content/home.asp?xcid=1
5.      Women’s and Children’s Hospital
Ph: 8161 7287
http://www.wch.sa.gov.au/services/az/divisions/paedm/childdev/index.html
6.      Commonwealth Carelink Centers-Established to assist people with disabilities to navigate through the services that are out there, acting as a single point to obtain current information. Free of charge and confidential:

* North & West Country SA Commonwealth Respite and Carelink Centre
33 McKay Street
PORT AUGUSTA 5700

* South & East Metropolitan SA Commonwealth Respite and Carelink Centre
290 Glen Osmond Road
FULLARTON 5063

* North & West Metropolitan SA Commonwealth Respite and Carelink Centre
77 Gibson Street
BOWDEN 5007

* South East Country SA Commonwealth Respite and Carelink Centre
4 Third Street
MURRAY BRIDGE 5253

Education—

Autism Specific Early Learning and Care Centers
http://www.fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/autism_specific_ccc.aspx

Educational Websites—

1.      http://www.learn2bebuddies.com.au/
2.      http://do2learn.com/games/learningames.htm (for interactive games, including feelings game, sequencing activity, activity teaching parts of the body, road safety song, matching game, picking the odd one out)

Education/Classroom Strategies and Protocols—

1.      http://www.health.gov.au/internet/main/publishing.nsf/Content/D9F44B55D7698467CA257280007
A98BD/$File/autbro.pdf
2.      http://www.aspect.org.au/publications/ClassroomIdeasforChildren.pdf
3.      http://www.specialed.us/autism/early/ear11.htm
4.      http://www.specialed.us/autism/structure/str10.htm
5.      http://www.specialed.us/autism/Autism.pdf

General Disability Information and Education—

1.      Novita
http://www.novita.org.au/Default.aspx?p=1
2.      Australian Association for Families
http://www.aafcd.org.au/

Government—

1.      A-Z of Disability SA Fact Sheets
http://www.sa.gov.au
2.      Helping Children with Autism Package-Federal funding and support packages available to children with Autism Spectrum Disorder
http://www.fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/default.aspx

Online Forums/Groups—


Parent Support Groups—

1.      The Flinders University Early Intervention Research Program
https://socsci.flinders.edu.au/psyc/research/autism/eirp.php
2.      Playgroups and services for younger  children and families with ASD http://www.playgroupaustralia.com.au/sa/go/playconnect-program
3.      My Time groups-A chance to meet and talk with other families of children with a disability and find support and understanding. My Time groups in SA-
http://www.mytime.net.au/index.php/groups/south-australia My Time information-
http://www.mytime.net.au/~mytime/images/stories/PublicDocuments/the%20right%20time.pdf
4.      List of Parent Groups from Parenting SA
http://www.parenting.sa.gov.au/parentgroups/search.asp
5.      Early Development Program at Autism SA-Provides support for young children with an Autism Spectrum Disorder up until the child commences school or 6 years of age and are registered for services with Autism SA.
For further information, contact the Coordinator Early Development Program at Autism SA.
Ph: 8379 6976
6.      A list of parent support groups can be located on the Austism SA Website
http://www.autismsa.org.au/

Recreation—

1.      YMCA of SA: Sharing the Fun-'Sharing the Fun' provides a non-threatening and welcoming environment for children with a disability, in which they can have fun and enjoyment. However, it is not only enjoyable but also beneficial for the children. Whilst having fun, they are also developing the necessary movement skills for successful involvement in integrated physical activities, sports or recreational opportunities. Children who have a disability and are aged between 5 and 13 years can have fun and build on existing skills in Sharing the Fun, which is a non-competitive, recreational after school program which provides a comfortable environment where participants may improve their social and physical skills. http://sa.ymca.org.au/index3.php?O=directory&SID=298&action=View
2.      SASRAPID-The South Australian Sport and Recreation Association for People with Integration Difficulties Incorporated (SASRAPID) is an organisation which assists people with integration difficulties to become involved in community activities. SASRAPID provides assistance and enables participation into valued community sport, recreation and leisure activities. All inclusion is based on the ability and individual choice of the person. http://www.sasrapid.com.au/
3.      Recreation Link-Up-Recreation Link-up is a free service that provides recreation planning, information, education and introductory assistance for people with a disability. Recreation link-up can make it easier for people to become involved in recreation and leisure activities in their local community. Help people to become involved in an activity of their own choice, by developing a plan of action and identifying what needs to be put into place to achieve ongoing involvement. http://reclinkup.ymca.org.au/
4.      Government of South Australia: Office for Recreation and Sport-Specific programs and support for people with disabilities
http://www.recsport.sa.gov.au/programs-services/people-with-disability.html
5.      Disability SA recreational services and opportunities
http://www.sa.gov.au/subject/community+support/Disability/Corporate+and+business+information/
Disability+SA/Disability+SA+social,+recreation+and+support+groups

Respite—

1.      Anglicare
http://www.anglicare-sa.org.au/disability-services/
2.      Autism SA
http://www.autismsa.org.au/html/about/services.html#program
3.      Careers SA
http://www.carersaustralia.com.au/
4.      Centacare
http://www.centacare.org.au/
5.      Commonwealth Respite and Carelink Centre
http://www9.health.gov.au/ccsd/
6.      Disability SA Information sheet about respite
http://www.sa.gov.au/upload/franchise/Community%20Support/Disability/Information%20sheets%20-%
20Disability%20SA/Respite%20care.pdf
7.      Disability SA
http://www.sa.gov.au/subject/Community+Support/Disability/Corporate+and+business+information/
Disability+SA/Disability+SA+offices
For more information about who is eligible for respite through Disability SA, telephone 1300 786 117 (cost of a local call) or email disabilitysaintake@dfc.gov.sa.au
8.      Southern Country Commonwealth Career Respite Centre (SCCCRC)-Carers SA manages trhe Southern Country Commonwealth Carer Respite Centre; providing services to caregivers living in the Adelaide Hills, south and east of and including Mt Barker, Southern Fleurieu, Kangaroo Island, Riverland, Murray Mallee and the South East areas. Working in partnership with other services to provide carers with access to respite.
http://www.carers-sa.asn.au/respite.htm

Sex Education—

1.      http://www.childabusemd.com/juvenile/normal.shtml
2.      http://www.fpq.com.au/pdf/Fs_Aspergers.pdf
3.      http://www.nichcy.org/InformationResources/Documents/NICHCY%20PUBS/nd17.pdf
4.      http://www.shinesa.org.au/index.cfm?objectid=BC190704-F5C8-7600-6735FCEDEA17E89D
5.      Shine SA
http://www.shinesa.org.au/?objectid=508918BE-C74E-1C07-C0B06A022A738ED8&topicCategory=&topicKeyword=disability

Siblings—

1.      Disability SA Information Sheet
http://www.sa.gov.au/upload/franchise/Community%20Support/Disability/Information%20sheets%20-%20Disability
%20SA/Children%20and%20young%20people%20-%20siblings%20%28PDF%20175kb%29.pdf
2.      Siblings Australia
http://www.siblingsaustralia.org.au/

Social Skills—

Triple A Social Development Group-Social development group focused on expressive arts and exploring social issues through theatre, music, writing, and other art forms. There will also be a social element to the sessions for those who wish to meet others and form friendships.
http://www.autismsa.org.au/pdf/TripleA/Expressions_of_interest_info_mail.pdf

Online Resources—

1.      http://www.region2library.org/SocialStories.htm (social story templates - check them out and see if you can modify some of the many social story templates for your own child. There are some that are PowerPoint files, which is a great idea, especially for children who are more motivated by activities and programs that are computer-based)http://pbskids.org/itsmylife/games/story_strips_flash.html
2.      http://www.polyxo.com/socialstories/ (sample social stories and general information about why and how to use social stories to teach specific social skills)

Strategies—

1.      http://www.polyxo.com/
2.      http://www.gosh.nhs.uk/gosh_families/information_sheets/behaviour_problems_autism/behaviour_problems_
autism_families.html
3.      http://www.brightfutures.org/mentalhealth/pdf/tools.html#families

Bullying—

1.      http://pbskids.org/itsmylife/games/bullies_flash.html (game)
2.      http://www.bullyingnoway.com.au/
3.      http://www.domokos.com/freeebooks.html
4.      http://www.kenrigby.net/
5.      http://www.police.govt.nz/service/yes/nobully/

Clipart—

1.      http://www.dorlingkindersley-uk.co.uk/static/cs/uk/11/clipart/home.html
2.      http://www.inmagine.com/
3.      http://www.pics4learning.com/
4.      www.dkimages.com 

Communication/language and play—

1.      http://www.specialed.us/autism/verbal/verbal11.html (article)
2.      http://www.specialed.us/autism/nonverbal/non11.htm (article)

Feelings and emotions—

1.      http://www.do2learn.com/games/facialexpressions/face.htm  (This website is an interactive one, where the user can create and manipulate a vast range of potential expressions. Specific expressions of being afraid, interested, sad, ashamed, disgusted, surprised, happy and angry are preset on clicking buttons at the top of screen)
2.      http://urbanext.illinois.edu/conflict/emotions01.html
3.      http://kidshealth.org/parent/emotions/index.html

Friendship—

http://pbskids.org/itsmylife/friends/ 

Mental Health/Social Anxiety/stress/depression—

1.      http://kidshealth.org/ (a great website, has sections for parents, children and adolescents)
2.      http://www.cci.health.wa.gov.au/resources/consumers.cfm

Support Services—

1.      Carers Australia
http://www.carersaustralia.com.au/
http://www.familyconnectionssa.net/
2.      Community Support  Inc-In-home and Community Support
http://www.csisa.org.au/

Visuals—

1.      http://www.setbc.org/curriculumset/default.aspx
2.      http://www.setbc.org/pictureset/
3.      http://www.tinsnips.org/
4.      http://www.usevisualstrategies.com/article1.html
5.      www.spectronicsinoz.com/activities
6.      www.usevisualstrategies.com/pictures.html


By

Aspergers Behavior Designed To Irritate Parents?

Question

Is there anything I can do to help me remember that my aspergers son’s behaviors are not designed to irritate me and that to him they are needful or make sense?

Answer

I know! It is so hard to deal with this, especially as people with Aspergers (high functioning autism) get older. We expect them to stop doing things that irritate us as they mature! But, they can't and they won't. Their behaviors make sense to them, even when we explain why they don't make sense "in the real world," as we think of it. Some of this is due to the fact that they "need" the behaviors, for whatever reason. Some of it is due to mindblindness, the lack of ability to understand the emotions, feelings, motivations, and logic of others and not care that they don't understand! Their mindblindness makes us feel as though they don't care about us.

Let me describe a perfect example of mindblindness. The mother of someone that I know has Aspergers, does not like sour cream. She is quite adamant about not liking it, either plain or in any dishes. However, when I make a fruit salad with pineapple, mandarin oranges, coconut, baby marshmallows, and sour cream, she eats it like crazy! But, she only eats it if I tell her it is made with whipped sweet cream. If I even mention sour cream, she has a meltdown. Why? Who knows? In her mind, she hates sour cream, but she loves the fruit salad, therefore, the fruit salad cannot be made with sour cream. This is how people with Aspergers think. She has a belief and it can stand no challenge. Under no circumstances will she ever change her mind. This is mindblindness. This is the kind of thing that makes us throw up our hands in defeat!

It helps to have a sense of humor. It's easier to laugh about such things when you don't have to live with them though. In all seriousness, I recommend that you find someone you can pour your heart out to, perhaps a good counselor. It does help to talk to someone who will understand and maybe even make some good suggestions. Joining a group in the community or online to talk with others who care for people with Aspergers might help, too.

It also helps to have relatives who will take over and give you a break once in a while. Pamper yourself when you can. Take a hot bath, read a good book, eat a chocolate sundae. Get out of the house alone occasionally. Go to a movie. Visit a friend. Take one day at a time. Try to get eight hours of sleep per night.

When your son's behaviors start to drive you up the wall, duck into the bathroom, throw up your hands, and say, "Aspergers!!!!"

By

Aspergers and Identical Twins

Question

Out of curiosity, is Aspergers relatively common amongst twins who have been affected by TTTS before birth, specifically the 'donor' sibling? I was thinking of the link with oxygen starvation being the common denominator. Many thanks, by the way love the website/emails!!

Answer

For those who may not know, TTTS is a disease of the placenta. In a normal multiple birth pregnancy, some blood vessels are shared between the babies and blood flow between them is equal. One minute one baby will act like a donor, the next it will act as a recipient. In a pregnancy with TTTS, for some reason, the blood flow isn't equal between the babies. One baby will always be the donor and the other always the recipient. This causes one baby to be larger than the other.

Having said this, there is no solid research currently that suggests a link between TTTS and Autism Spectrum Disorders. However, new research with rats suggests that “oxygen deprivation” (one byproduct of TTTS) during birth could be a contributing cause of Autism.

There's no easy way to test the oxygen-deprivation theory in humans, and the finding isn't likely to lead to better treatments in the near future. Still, the research gives scientists greater insight into how factors other than genetics may play a role in autism.

Research reveals that when one identical twin develops an Autism Spectrum Disorder (ASD), the risk of the other developing it is substantially higher than it is for fraternal twins (approximately 88% higher). That compared with 31% among fraternal twins (unlike identical twins, fraternal twins are no more genetically similar than non-twin siblings). Identical twins also have greater similarities in the form of the ASD that they developed, their level of day-to-day functioning, and the risk of intellectual impairment.

Autism research has been guided by one important observation for the past several decades – that it has a large genetic component. That observation was made through twin studies. We show that important characteristics of ASD, such as the type of ASD, level of functioning and presence of other psychiatric disorders are more similar among identical twins. Thus not only are they more concordant overall, but the pattern of their disease is more concordant.

While experts generally agree that genetics plays a major role in ASDs, they also believe that environmental factors conspire with genes to make certain children vulnerable. Researchers are still trying to figure out what those environmental factors are.

The Aspergers Comprehensive Handbook
By

Aspergers and Sibling Issues

In this post, we will be referring to the sibling with Aspergers as the “Aspie” – and the sibling without Aspergers as the “neurotypical”...

The discovery that a child has Aspergers (or high-functioning autism) has a profound effect on a family. Kids suddenly must adjust to a brother or sister who, because of their disorder, may require a large portion of family time, attention, money, and psychological support. Yet it is an important concern to any family that the neurotypical sibling adjusts to the Aspie, because the neurotypical child's reactions to the Aspie can affect the overall adjustment and development of self-esteem in both kids.

In any family, each sibling, and each relationship that siblings have, is unique, important, and special. Brothers and sisters influence each other and play important roles in each other's lives. Indeed, sibling relationships make up a youngster's first social network and are the basis for his or her interactions with people outside the family. Brothers and sisters are playmates first; as they mature, they take on new roles with each other. They may, over the years, be many things to each other -- teacher, friend, companion, follower, protector, enemy, competitor, confidant, role model. When this relationship is affected by Aspergers, the long-term benefits of the relationship may be altered (e.g., the Aspie may have limited opportunities to interact with other kids outside the family; thus, social interaction between siblings often takes on increasing importance).

Each youngster's personality and temperament play an important role in their response toward a sibling, including one with Aspergers. Although both positive and negative feelings exist in all sibling relationships, for school-age kids and young adolescents, these relationships tend to be more positive than negative in their feeling tone. Furthermore, kids with an Aspergers sibling appear to have more positive and fewer negative behavioral interactions than do those with a non-Aspergers sibling. These positive aspects include higher levels of empathy and altruism, increased tolerance for differences, increased sense of maturity and responsibility, and pride in the sibling's accomplishments.

Living with a brother or sister, including one with Aspergers, can be rewarding, confusing, instructive, and stressful. Siblings of an Aspie express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward siblings who have no disability. Kids react toward an Aspie with feelings of love, empathy, pride, guilt, anger, and support; the predominance and prevalence of these reactions have great impact on the levels of stress and coping ability of the Aspie. The positive or negative nature of the relationships between siblings and among family members may be influenced by factors such as these:
  • age differences between kids in the family
  • family's child-rearing practices
  • family's lifestyle
  • family's resources
  • kind and quality of the support services available in the community
  • kinds of coping mechanisms and interaction patterns that exist within the family
  • number of kids in the family
  • other stress-producing conditions that exist in the family
  • severity of the disorder

Each youngster's reaction to having a sibling with Aspergers will vary depending on his or her age and developmental level. The responses and feelings of the neurotypical sibling toward the Aspie are not likely to be static, but rather tend to change over time as the sibling adapts to having a brother or sister with Aspergers and copes with day-to-day realities. Preschool-aged siblings, for example, may feel confused, afraid, anxious, and angry about a brother or sister with Aspergers. All kids are different; the intensity of a youngster's concerns, needs, and experiences will vary from sibling to sibling, as will a youngster's reaction to -- and interpretation of -- events. The younger the child the more difficult it may be for him or her to understand the situation and to interpret events realistically. Neurotypical siblings may resent the time their parents give to the Aspergers sibling and perceive it as rejection. They may wonder what is wrong with them that their parents love their Aspergers sister or brother more.

During the early years, the neurotypical sibling may mimic the physical or behavioral actions of the youngster with Aspergers, or the neurotypical sibling may regress in behavioral development. Later on, he or she may be prone to extremes of behavior such as "acting out" or becoming the "perfect" child.

Elementary school-aged kids may feel embarrassed or ashamed as they recognize differences between their Aspergers sibling and someone else's “normal” brother or sister. They may worry about "catching" or developing the disorder, and they may feel guilt because they themselves do not have the disorder. They may also feel protective and supportive of their Aspergers sibling, and this may trigger conflicts with peers.

Young adults may have future-oriented concerns. They may wonder what will become of their brother or sister with Aspergers. They may also be concerned about how the people they socialize with, date, and later marry will accept the brother or sister with Aspergers. Additional issues faced by young adults may include genetic counseling when planning their own families, and coping with anxiety about future responsibilities for the brother or sister with Aspergers.

Family Stress Factors—

The discovery that a youngster has Aspergers can produce stress among family members. Stress can also be caused by a number of ongoing factors, or by special circumstances. Siblings need an explanation for the tensions within the family and the cause of the tensions.

Some families are stressed by the amount of financial resources required to meet the needs of the youngster who has Aspergers. Some moms and dads may expect neurotypical siblings to accept the brother or sister with Aspergers as "normal." This expectation can lead to internalized feelings of anxiety and jealousy which the neurotypical sibling may be reluctant to voice. The parents, in turn, may fail to recognize the youngster's unhappiness and may deny that a problem exists.

Neurotypical siblings may feel obligated to compensate for the youngster with Aspergers, to make up for that youngster's limitations. They may be acting as a surrogate parent, assuming more responsibility than would be usual in the care of a neurotypical sibling. On the other hand, siblings may help the family by providing their parents with assistance and support, which they otherwise might not have, in the care of the youngster with Aspergers. The neurotypical youngster may experience jealousy because he or she may be required to do family chores, whereas, the sibling with Aspergers is not required to do them -- despite the fact that the Aspie may be unable to do them, or would have great difficulty doing them. The neurotypical sibling may resent having to integrate the Aspie into the neighborhood peer group, and may experience or perceive peer rejection because of having a sibling with Aspergers. Finally, the neurotypical sibling may feel embarrassment because of the Aspie’s characteristics or inappropriate behavior. Essentially, moms and dads, other adult family members, and professionals should realize that neurotypical siblings need special understanding, attention, support and recognition of their unique contributions to the family system.

Siblings with Aspergers, on the other hand, also experience stress as family members. These common stresses include:
  • anger resulting from an inability to do things as easily and quickly as their nondisabled brothers and sisters
  • frustration at not being able to make themselves understood
  • irritation over constant reminders about everything
  • low self-esteem
  • unhappiness at being left to play alone
  • withdrawal because of lack of social skills

Through it all, with understanding and support, there are usually many positive interactions and normal sibling give-and-take situations from which each learns and matures.

When moms and dads have a double standard for Aspergers and neurotypical kids, conflicts can arise. Even though the youngster with Aspergers, in fact, may need and receive more parental attention, the amount given may be perceived as unfair by neurotypical siblings. Some moms and dads, on the other hand, may tend to overindulge the “normal” sibling in an effort to compensate for a brother or sister with Aspergers. The normal rivalry between all siblings may cause the neurotypical sibling to perceive incorrectly that the parents favor or love best the sibling with Aspergers. Sara expressed the resentment she feels when her brother is dealt with lightly in comparison to her punishments:

"Normal kids can get pushed aside when their brothers or sisters has Aspergers. Jacob seems to get help naturally --it's like attention to his needs is "built into the system." I'm the bad one, but he can do no wrong. He makes all the messes, but I get into trouble if I don't empty the dishwasher."

Unlike their parents, siblings may have no knowledge of life without a brother or sister with Aspergers. Siblings generally are poorly informed about this disorder. Yet siblings' needs for information may be as great - or greater - than those of parents, because of their identification with their brother or sister with Aspergers. It is important to bear in mind that they have limited life experiences to assist them in putting the disorder into perspective. Moms and dads should respect the neurotypical siblings' need to be recognized as an individual who has concerns and questions as well as his or her right to know about the disorder. Neurotypical siblings may require information throughout their lives in a manner and form appropriate to their maturity.

For many siblings, anxiety-producing feelings often are not expressed in day-to-day family interactions and discussions, and are shared even less at school. These internalized feelings complicate sibling relationships, for kids need to vent their emotions. Kids should be given an explanation for their sibling's problems so that they will not make incorrect assumptions.

Moms and dads and professionals need to be aware that there may be a gap between the neurotypical sibling's knowledge and actions. A neurotypical sibling may be able to rationally explain a brother's or sister's disorder to inquiring friends or neighbors, but may still exhibit temper tantrums over the same sibling's actions in the home.

Most importantly, the need for information and understanding does not have to be addressed solely by the moms and dads. A youngster's disorder is a concern which should be shared by parents, helping professionals, and society. For example, some progressive clinics and hospitals have designed programs that include siblings from the beginning. These programs offer Family Support Groups which bring entire families together as a means of sharing information and mutual support.

It is important for teachers to be sensitive to neurotypical siblings' feelings and needs. Teachers can do much to promote positive sibling interactions as well as acceptance of Aspergers in all kids. During the school years, especially the early years, teachers can help to promote sibling awareness and interaction by providing opportunities for siblings to learn about Aspergers (e.g., conducting a "sibling day" or a “sibling workshop” can be an excellent way of introducing siblings to Aspergers). On this day, activities can include sharing positive experiences about having a sibling with Aspergers. Siblings without the disorder might be interested in seeing and/or participating in some of the unique activities in which their Aspergers brother or sister participates in.

Information puts fears into perspective. In most instances, simply knowing the facts about Aspergers takes away the sting of embarrassment, as well as uncertainty and fear. While embarrassment can and does occur in many situations over the years, knowledge can help one cope.

Ask parent groups, social workers, therapists, doctors, teachers, or counselors about the availability of support groups and other sibling resources in your area.

Planning For the Future—

Planning for the future raises many important issues for the family of a youngster with Aspergers. The most challenging of these dilemmas is the care of the adult sibling who has the disorder. Even though neurotypical adult siblings have lives (and often families) of their own, they face unusual, additional responsibilities because of their unique relationship with their brother or sister with Aspergers.

The amount of responsibility that adult neurotypical siblings assume for their adult sibling with Aspergers varies with individuals and with circumstances. It is dictated by a consideration of family and job responsibilities, personal choice, and available community support.

Perhaps the most challenging issue a family faces is, on the one hand, encouraging and fostering the independence and self-determination of the person with Aspergers and, on the other hand, facing the reality that, at some level, assistance may be necessary.

When planning for the future of the sibling with Aspergers, you should consider such things as mobility, social and communication skills, education, and the individual's own ideas about where to live and work. Even after careful planning and the appointment of a guardian or co-guardians, plans should be made for emergencies. A file should be kept in a safe place, known to all family members. The following ideas should be addressed when making future plans and the information should be included in this accessible file:

1. Neurotypical siblings should know where to access the needed educational, vocational, and medical records of the Aspergers sibling, and be ready to anticipate his or her changing future needs.

2. Know your state's laws regarding guardianship and independence. Do not assume that you as parents will automatically remain your youngster's guardian when he or she reaches the age of majority in your state. Establish whether the sibling with Aspergers requires no, partial, or full guardianship. This information should be in writing, and, if possible, make contingency plans in case the first-choice guardian is unable to assume that role. Be aware of the consequences in your state of not having a guardian appointed.

3. Families should gain an understanding of the legal and eligibility requirements of programs available to the family member with Aspergers. Investigate resources through government programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation, Independent Living Centers, employment services, parent and disability groups.

4. Families should discover the types of community resources available. The range of services and resources varies considerably according to place of residence. Keep abreast of any changes in the availability of these services. Consider the sibling's need for long-term care, as well as for employment and companionship.

5. Families should consider the future health of the sibling with Aspergers with respect to needed services and care. Moms and dads should document where he or she can receive medical care and the financial resources and arrangements necessary for this care.

6. Develop financial plans for future care. If the family is considering establishing a trust for the family member with Aspergers, it should consider the incomes of the kids in the family, including the sibling with Aspergers. Make a will only with an attorney experienced in devising wills for those who have an heir with this disorder. Inheritances must be treated with caution. It is especially important to investigate the continued eligibility for certain social services if assets from an estate, pension, or life insurance are left to the youngster with Aspergers.

7. Be aware that, as families grow and develop, the members within it change. Living with and caring for a youngster with Aspergers is different from living with and caring for an adult with Aspergers. Family members should continually ask themselves the following questions:
  • Are my career plans compatible with my responsibilities for my brother or sister with Aspergers?
  • How will the responsibility be shared with other family members?
  • How will these needs change?
  • Is the involvement financially, emotionally and psychologically realistic for me?
  • What are the needs of the sibling with Aspergers?
  • What can be expected from local support groups in the community?
  • What is and will be my level of involvement?
  • Will my future spouse accept my brother or sister?

The care of a sibling with Aspergers is, in large part, a family affair and a responsibility that should be shared as evenly as possible. By planning effectively for the future, parents can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.

Suggestions to Moms and Dads—

Moms and dads set the tone for sibling interactions and attitudes by example and by direct communications. In any family, kids should be treated fairly and valued as individuals, praised as well as disciplined, and each youngster should have special times with parents. Thus, moms and dads should periodically assess the home situation. Although important goals for a youngster with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to neurotypical siblings.

To every extent possible, moms and dads should require their kids with Aspergers to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the youngster with the disorder should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other kids.

Care-giving responsibilities for the youngster with Aspergers should be shared by all family members. It is especially important that the burden for care-giving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family's care-giving burdens. Examples include recreation activities, respite care, and parent support groups.

Here are several strategies suggested by neurotypical siblings themselves for mothers/fathers to consider in their interactions with their “normal” kids. These siblings suggest that moms and dads should:
  • Welcome other kids and friends into the home
  • Use respite care and other supportive services
  • Use professionals when indicated to help siblings
  • Teach siblings to interact
  • Schedule special time with the neurotypical sibling
  • Require the Aspergers youngster to do as much for himself or herself as possible
  • Recognize that they are the most important, most powerful teachers of their kids
  • Recognize special stress times for siblings and plan to minimize negative effects
  • Recognize each youngster's unique qualities and family contribution
  • Provide opportunities for a normal family life and normal family activities
  • Praise all siblings
  • Listen to siblings
  • Limit the care-giving responsibilities of siblings
  • Let siblings settle their own differences
  • Join sibling-related organizations
  • Involve all siblings in family events and decisions
  • Be open and honest
  • Accept the disorder

Kids with special needs may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book
==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism
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