Tag Archives: Quality Of Life

Question?: Rett Syndrome Genetics

Sandra asks…

Do you think we will ever find a “cure” for ?

things like Rett Syndrome, MS, etc..

I know its a catch 22, if we find cures for all diseases we will eventually over popluate the world to the point of self extinction, but even so is this a reason not to find & use cures.

Example, lets say a diseases that doesn’t generally effect the longevity of ones life (i.e. Rett Syndrome). Someone with Retts can live as long as someone without it so finding a cure wouldnt have a negative affect, ( I would think) it would just give somebody who would be on the earth anyway a better quality of life. Would this be considered a slippery slope in genetics?

Also, for people who believe we shouldn’t find cures for certian things b/c of its negative impact & it possibly risking over population – would you be agreeable to finding cures for people already born so that they can enjoy life to the fullest but in exchange the country/world put limits on how many kids people can have. Killing 2 birds with one stone-people are healthy & living quality lives & we are not depleting our world of its natural resources b/c of too many people?

okay sorry so long & I know its a rather odd question I was just wondering what others thought about this topic?

admin answers:

I think it’s possible to find a cure for any physical affliction.

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Question?: Adhd Symptoms In Adults

Jenny asks…

Do Adhd symptoms worsen after taking adderall?

My doctor put me on Adderall and I feel much better and focused, but I worry about the future. I don’t see myself ever abusing the drug, only following the doctor’s dosage. I don’t want to be taking adderall forever though. If I stop taking it after a couple of years (once I’m done with college), will my Adhd symptoms get worse? Am I better off not taking it and keeping my moderate symptoms of ADHD rather than letting it be severe later on?

admin answers:

For about 50% of people who have ADHD as a child they will continue to have symptoms during their adult life. So people could take medication for years. Adderall will not make ADHD worse in any way. If you do stop taking it after you are done with school you might find that you still have symptoms and might continue to need medication. The only risk of long term use of stimulants is that there is a small chance of developing depression later on in life. It is not common and typically the depression is fairly mild and could be treated.

No one wants to take medications for a life time but it can be worth it for some people. So if you stop taking it and you are having problems then I think it is worth the risk. After all, you want a good quality of life so if you need it then take it.

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A Message For Parents: You Have the Power

When a child is diagnosed with autism, parents tell me they experience a range of emotions, from shock to despair to hopelessness, often with very little encouragement or light at the end of the tunnel. There is no “The bad news is this, but the good news is that”. It’s “the bad news is your child has autism, and the worse news is there is no cure and he probably will not have a very good outcome”. Some parents are still told they should just focus on their ‘normal’ children because the one with autism will likely not amount to much. One family relayed a heartbreaking story of a professional that not only informed them their child had autism and should be institutionalized, but also that they should put him in ‘time out’ and spray him with a water gun every time he flapped his hands as a form of self-stimulation, as if he were a house-pet that were peeing on the couch. This is a child that likely did not make an association between behavior and consequences and probably was living within a very confusing sensory-perceptual experience. And this was not 20 years ago, but more like 5.

I am here to tell you that while there still is no ‘cure’ for autism, there IS a tremendous amount that you as a parent can do for your child to help him lead a very meaningful, joyful and enriching life. Your child can make significant progress and have a wonderful life. You also can have a “normal” life, as a parent of a child with autism. You can choose to focus on those things that will enhance your child’s development AND create a high quality of life for you and your entire family. In addition, you can choose not to feel guilty that you may desire to do something different than what is commonly expected in the autism treatment world. Only you can know what feels right for your child and family’s situation.

My hope is that you as a parent can experience freedom to choose what works for you and your family. Historically there has been a lot of fear in the autism field. This fear has come through in the design of treatments that initially focused on the appearance of ‘normalcy’ without giving thought to the internal experience of the person being treated. In addition, people with autism were also not treated with much dignity or respect. Therapies that are based on the theory of the old model often seem to be more concerned with changing behavior to make ‘normal’ people feel more comfortable, as opposed to leading to improvements in Quality of Life (i.e. Employment, Relationships, Independence).

Parents are given a large injection of fear throughout the assessment and treatment planning process (“If you don’t get him to do X by the time he is 5, it will never happen”). In many cases, families are provided with a diagnosis and immediately corralled into a range of therapies in an attempt to ‘cure’ the child by the time he is in Kindergarten. Be very mindful of this tendency to base decision-making on fear. If you are feeling fearful, you are more likely to operate out of a fight-or-flight mode, which is reactive instead of proactive. If you are operating out of fear, it is highly likely the approach to your child’s autism will take the form of ‘treatment’, ‘cure’, or ‘fixing’ him (even if those words are not used). Your child may very well perceive judgment and shame, and may come to learn to ‘go through the motions’ to appear acceptable to others. Don’t make decisions “because everyone else is doing it”, but instead carefully consider how an approach will help your child and what impact it will have on the entire family’s quality of life.

Some families have enormous success with the traditional treatments and others keep searching because their child needs something different. In my practice, I have attracted those families who have more complex children that have not responded as well as their parents had hoped. For those brave souls who keep searching and who not only do not give up on their child, but who also may be among the first to stray away from the traditional path – I applaud you. It takes courage to go to a parent support group or talk to parents in a waiting room and have them ask you why you are not doing X, Y or Z therapy like every other parent who has a child with autism? Surely you must know that the only way you can recover your child to a ‘normal’ state is if he spends all his waking hours with people other than his immediate family so they can perform “intervention” on him. Has no one asked the question of what would happen to a “normal” child if he spent 40 hours a week in highly directive, one-sided therapeutic settings, constantly bombarded with questions and ‘testing’ of his knowledge? Would he maintain his natural motivation to be with people, or would he want respite from their demands?

I am not saying that some children don’t benefit from structure or repetition, but I am saying that as a parent, know that what your child needs most for healthy development are things that only YOU can provide. Children need a strong foundation of safety and security to anchor them in the world. This is even more true for children (and adults) with ASD because individual neurological vulnerabilities and differences make them more prone to becoming stressed. I don’t necessarily mean ’emotionally’ stressed, though that may be the case, I am also referring to the fact that people on the autism spectrum are often operating from a state of panic and overwhelm. This occurs on every level, from the level of sensory processing to emotional regulation to social interaction to cognitive functioning. It’s like a house of cards where some of the bottom cards are missing – the slightest breeze, and the whole house comes down.

As a parent you can give your child a solid, strong foundation so he develops the following capacities that are important for a high quality of life:

• Desire to connect and share with others
• Ability to recover from stressful situations and setbacks
• Competence in Relationships
• Motivation to explore new things and try new challenges
• High level of self-awareness
• Self-Regulation for as much independence as possible
• High sense of self-worth and self-esteem
• Self-expression through creative pursuits and hobbies
• Cultivation of special talents
• Feeling loved and accepted for who she is

If you as the parent have the most power to support your child, does that mean you have to go it alone? Of course not. You can seek emotional support through local and online parent groups as well as work with a variety of professionals who can guide you on your path. Knowing you have the power to help your child does not mean that you have to sacrifice your whole existence to autism either. You can prioritize those things that will make the most impact on helping your child live in the ‘real world’ (as opposed to an artificial compensatory environment where he looks good as long as there are no unexpected surprises). You can hire babysitters to give you a break and you can use therapies strategically to get the most benefit while conserving your (and your child’s) energy.

You will likely move through different phases in your child’s treatment over his lifetime, and there is no one ‘right’ way to go about it. If you understand from the beginning that there is not a cookie-cutter approach to treating every child and that you can learn to assess at any point in time exactly what he needs right now, you will relieve yourself of a lot of guilt and anxiety about your decisions. Keep these words in mind: “This is for now, NOT forever.”

Here are a few things you can do daily to support one of the most basic foundations children need, safety and security:

• Cuddle with your child. Did you know that facial gazing, synchronized breathing and touch boost brain chemicals important for bonding and social interaction? If your child is too old to cuddle, there are Tactile Integration programs out there that look like a massage, which provide much-needed organized input for your teen or adult family member with autism.

• Make a point to smile and make eye contact with your child any time she meets your gaze. This is for the same reason as mentioned above.

• Give your child a ‘job’ to do so he experiences himself as an important part of the family. Put him in charge of feeding the dog or emptying the dishwasher. If he is too young or needs help to complete his chore, do it with him (not for him). Some children develop a brand new sense of competence and motivation when parents give them roles like this.

• Spend time daily to be with your child side by side without placing any demands on him. This means nonverbal demands as well – don’t constantly orient toward your child every time he makes a move. Don’t lean your face in to his face. If you have a tendency to talk too much, be quiet. Give yourself a short time frame to get started with and gradually expand the time. (Note that watching TV together does not count).

• Adjust your pace so that you and your child are in “rhythm”. If you are frantically prompting and repeating questions three times before your child can respond, then your communication is not balanced. Slow your pace and give your child time to respond. Be mindful of a 1:1 ratio of communicative attempts if possible.

These are general suggestions to get started with bonding and creating an atmosphere conducive to developing those capacities that are required for a higher quality of life.

April Choulat teaches parents, educators and therapists around the world how to build brighter futures for children with autism by using innovative approaches based on the latest research. Get her FREE ezine and articles at http://www.pathwaysdlc.com/.

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Principles Of Excellent Autism Care And Treatment

As an autism consultant I’ve observed families struggle with the overwhelming amount of information and treatment options recommended for their child. While I don’t believe that any approach addresses all of a child or family’s needs, I have seen the effects (both positive and negative) of enough approaches to appreciate the principles that seem to lead to the best results. In my quest to get to the ‘root’ of my client’s obstacles to progress, I’ve trained and achieved certification in several complementary modalities over the past several years. This list is a summary of some of my observations of what is most helpful working with families through a variety of developmental approaches:

1. Treatment is Heart-Centered – all caregivers (parents, babysitters, therapists) and service providers should ideally be coming from a place of supportive, loving energy. (Not to be confused with celebrating for no reason).

2. Family Priorities are established in the intake process to guide treatment objectives.

3. Treatment goals are directly related to functional improvements in Quality of Life for the child and the family. (A child in Florida does not need to know what a sheep is when he doesn’t know another person is in the same room with him.)

4. Spontaneous independent demonstration of skills and behavior is how progress should be measured – it does not matter what a child is doing when prompted if we don’t see spontaneous generalization and use of skills.

5. Instill in parents that they don’t have to do everything at once, nor do they have to do everything before the child turns 5 years old. The medical establishment unnecessarily stresses parents by drilling this false notion into their psyche. People grow and develop throughout their whole lives. Otherwise none of us would have learned to drive a car.

6. Don’t believe “conventional wisdom”. Science is important and critical thinking is imperative. However, be aware that it takes decades before the cutting edge research is distilled into textbooks which are used to train the next generation of therapists. The majority of professionals diagnosing autism and making treatment recommendations have little real-world experience in the homes of families who live with an autistic child. In addition, it is rare to find a diagnosing professional who has a good idea of the pros and cons of various treatment modalities. Just because a PhD or MD says ABA is the ‘only’ effective autism therapy does not mean it is true (it is not). It just means it is the only one they have heard much about and they probably learned about it in their doctoral or medical school program at a continuing education seminar.

7. Autism can be thought of as a disorder of Regulation – therefore, treatment priorities should emphasize ‘bottom-up’ as well as ‘top-down’ processing modalities that support regulation of the brain and nervous system. Self-regulation and Co-regulation can be addressed through a combination of various body-mind (i.e. HANDLE® and MNRI®) and cognitive-developmental approaches (i.e. RDI® and Miller Method®) that are very successful at getting to the root of many of the processing challenges children with autism tend to have.

8. Teaching skills (i.e. academics, ABA, etc.) should be addressed after Self-Regulation and Co-regulation are in progress or developing. (Self-regulation is not to be confused with “Compliance”, which often happens in place of mindfulness and self-regulation.)

9. Parents should be taught as soon as possible about the concepts of regulation, co-regulation, and experience-sharing communication. Co-regulation is rarely talked about in most autism therapies, aside from RDI®. It is critical that families understand this concept, because it is a foundation to communication and independent functioning, and is often non-existent with individuals with ASD. Instead a pattern of compensation develops and ‘pseudo-coordination’ or ‘pseudo-conversation’ ensue.

10. Watch out for the tendency to ‘over-therapize’ the child with autism. Remember that children with autism are children first.. It is not ‘normal’ for a child to spend dozens of hours each week in one-sided therapeutic interactions (which much of autism treatment can be without understanding co-regulation, which is mentioned in #9). It is important that children with ASD are provided with competent roles and participate in family life like their siblings. We hope for children with autism to turn out ‘normal’ as adults when much of their childhood does not provide ‘normal’ experiences if they are over-therapized.

11. Pay attention to how the child spends his time. The brain changes itself and organizes itself through experience. This means every waking hour the child with autism is practicing and rehearsing building neural pathways, digging ‘grooves’ deeper and deeper. Think about the child’s interests and how much time he spends engaging in repetitive, “mindless” activities (to reference Dr. Steve Gutstein), how much time he spends watching television or playing a video game. Parents can significantly alter the course of the child’s brain development by becoming educated on autism deficits, and making simple adjustments to daily interactions to build opportunities for mindfulness, social engagement and creative thinking. The brain does not stop self-organizing after age 5, and parents can make a significant difference in brain development if they are aware of a few key strategies.

April Choulat from Pathways Developmental Learning Center, Inc. For useful tips and information on educational programs for autism remediation, visit us today at http://www.pathwaysdlc.com/.

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Autism

Autism is a major, peer-reviewed, bi-monthly, international journal, providing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention; diagnosis; training; case study analyses of therapy; education; neuroscience; psychological processes; evaluation of particular therapies; quality of life issues; family issues and family services; medical and genetic issues; epidemiological research. This journal is a member of the Committee on Publication Ethics (COPE)

Impact Factor: 2.606
Ranked: 18 out of 66 in Psychology, Developmental

Source: 2010 Journal Citation Reports ® (Thomson Reuters, 2011)

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Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study

Aspects of quality of life in adults diagnosed with autism in childhood Sign In to gain access to subscriptions and/or My Tools. sign in icon Sign In | My Tools | Contact Us | HELP SJO banner Search all journals Advanced Search Go Search History Go Browse Journals Go Skip to main page content

Home OnlineFirst All Issues Subscribe RSS rss Email Alerts Search this journal Advanced Journal Search » Aspects of quality of life in adults diagnosed with autism in childhood A population-based study Eva Billstedt

Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, University of Gothenburg, Sweden, eva.billstedt{at}vgregion.se I. Carina Gillberg
Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, University of Gothenburg, Sweden Christopher Gillberg
Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, University of Gothenburg, Sweden Abstract The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13—22 years after original diagnosis). A newly constructed scale for rating ‘autism-friendly environment’/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group’s general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum.

autism adult outcome quality of life sexuality © The Author(s), 2011. Add to CiteULikeCiteULike Add to ConnoteaConnotea Add to DeliciousDelicious Add to DiggDigg Add to FacebookFacebook Add to Google+Google+ Add to LinkedInLinkedIn Add to MendeleyMendeley Add to RedditReddit Add to StumbleUponStumbleUpon Add to TechnoratiTechnorati Add to TwitterTwitter What’s this?

« Previous | Next Article » Table of Contents This Article Published online before print October 5, 2010, doi: 10.1177/1362361309346066 Autism January 2011 vol. 15 no. 1 7-20 » Abstract Full Text (PDF) All Versions of this Article: current version image indicatorVersion of Record – Feb 2, 2011 1362361309346066v1 – Oct 5, 2010 What’s this? References Services Email this article to a colleague Alert me when this article is cited Alert me if a correction is posted Similar articles in this journal Similar articles in PubMed Download to citation manager Request Permissions Request Reprints Load patientINFORMation Citing Articles Load citing article information Citing articles via Scopus Citing articles via Web of Science Citing articles via Google Scholar Google Scholar Articles by Billstedt, E. Articles by Gillberg, C. Search for related content PubMed PubMed citation Articles by Billstedt, E. Articles by Gillberg, C. Related Content Load related web page information Share Add to CiteULikeCiteULike Add to ConnoteaConnotea Add to DeliciousDelicious Add to DiggDigg Add to FacebookFacebook Add to Google+Google+ Add to LinkedInLinkedIn Add to MendeleyMendeley Add to RedditReddit Add to StumbleUponStumbleUpon Add to TechnoratiTechnorati Add to TwitterTwitter What’s this?

Current Issue January 2012, 16 (1) Current Issue Alert me to new issues of Autism Submit a ManuscriptSubmit a Manuscript Free Sample CopyFree Sample Copy Email AlertsEmail Alerts Rss FeedsRSS feed More about this journal About the Journal Editorial Board Manuscript Submission Abstracting/Indexing Subscribe Account Manager Recommend to Library Advertising Reprints Permissions society image The National Autistic Society Most Most Read Social StoriesTM to improve social skills in children with autism spectrum disorder: A systematic review Peer interaction patterns among adolescents with autistic spectrum disorders (ASDs) in mainstream school settings Emotional, motivational and interpersonal responsiveness of children with autism in improvisational music therapy Evidence-Based Practices and Autism Inclusion for toddlers with autism spectrum disorders: The first ten years of a community program » View all Most Read articles Most Cited Diagnosis in Autism: A Survey of Over 1200 Patients in the UK The Prevalence of Anxiety and Mood Problems among Children with Autism and Asperger Syndrome Anxiety in High-Functioning Children with Autism The CAST (Childhood Asperger Syndrome Test): Preliminary Development of a UK Screen for Mainstream Primary-School-Age Children Outcome in Adult Life for more Able Individuals with Autism or Asperger Syndrome » View all Most Cited articles HOME ALL ISSUES FEEDBACK SUBSCRIBE RSS rss EMAIL ALERTS HELP Copyright © 2012 by The National Autistic Society, SAGE Publications Print ISSN: 1362-3613 Online ISSN: 1461-7005

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The Essential Guide To Aspergers eBook Review – Make Way Through Your Child’s Heart

Is your child having difficulties in coping up with the people around his/her surroundings? Does he/she have unusual mannerisms?

Then, your child might be suffering from Aspergers Sydrome. If undiagnosed, your child might grow living a life with anxiety, stress, and depression in your family. That is why the Essential Guide To Aspergers For Parents has been formulated so as to guide and ensure you that your child will develop their full potential.

The Essential Guide To Aspergers is devised to guide you with the multi-faceted nature of a child having Asperger Sydrome. The “Guide To Asperger Sydrome For Parents” is a downloadable book that will provide you with the very latest information about this particular condition. It will also show you effective treatment procedures that are being used by families worldwide. The guide will show how it has affected families with coping up with the problem in a natural way.

If caring for a normal teenager is hard, taking care of a child with Aspergers is often worse if you don’t know how to manage. Taking care of a child that is having difficulties in coping up with his/her surrounding is a difficult task. Caring for them needs much attention. Early diagnosis could lead to a much fruitful way of improving the child’s quality of life. The “Guide To Asperger Syndrome For Parents” provides advice and information to help you make treatment decisions for your child. With effective treatment, children with Asperger Syndrome can learn to cope up with their disabilities.

With the Essential Guide To Aspergers you can begin with the benefits of an expert’s advice on the in-depth information and guide. You can optimize the child’s full potential. So what are you waiting for? By the way, “Guide To Asperger’s Syndrome For Parents” is available at http://bit.ly/EssentialGuideToAspergers. But if you are still confused or scared, you can ask for your money back so you would not tell that this is just another waste of time and money and that’s also a part of the developer’s confidence.

You’re only a parent once in a lifetime. Give your children the best.

Michelle talks about important solutions that can be found on the Internet regarding parenting and families. She understands the needs of a child in a family and how important it is to educate and nurture kids the right way, which is why she contributes quality articles to ArticlesBase.com.
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Autism Signs Baby – Signs That Your Baby Is Autistic

Autism Signs Baby

Several years ago, autism can only be recognized in children as early as 18 to 24 months of age. But today, after several studies and observations, we can now recognize the earlier signs of autism in babies. Signs include having an unusual eye contact, peculiarities of hearing, and social development and play.

The word “autism” is derived from the Greek word “autos” which means “self”, and it affects the way children view others in relation to themselves. This is why autistic children can be best described as “having their own world”. They want to play and be alone, do not want to be touched or hugged, and have problems interacting with others.

Autism is a pervasive disorder which affects multiple areas of functioning. ASD affects children differently – in their cognitive ability, in their IQ, in developing communications skills, in their relationship with others even with their own parents, and so many more.

Although there are still debates about the causes of autism, experts believe that the earlier autistic children receive treatment, the better the outcome is likely to be. Early intervention makes a huge difference in the battle against autism in babies. Signs of autism must be carefully observed and seek immediate help if you spot them in your child. Instead of playing the wait-and-see game, parents must be vigilant in observing the development of their child. This will greatly contribute in enhancing the quality of life of children. Autism Signs Baby

Researchers and experts are now claiming that they can recognize autism as young as 6 months old or even earlier in some cases. The good thing about this is that new and earlier treatment for autism can then be developed and it can make a huge difference in the child’s future.

Here are the red flags of autism in babies – signs that your baby is autistic:

Eye Contact – Having an unusual gaze or in making an eye contact is a very common sing of autism in babies. Signs of disinterest with other people and the environment can also be observed.

Hearing – Autistic babies respond less when called upon compared to normal developing babies. They are also not affected by any audible changes in the surroundings. Hence, most autistic babies are initially suspected of being deaf.

Social Development and Play – Autistic babies may show lack of interest in the types of play that other infants enjoy, even those which involve social interaction with the parents.

Because these early signs can vary in severity and symptoms, they may go unrecognized. Therefore, parents must be careful in observing the behavior of autism in babies. Signs of autism can also be a sign of other disorders.

Also, according to one research, a child who has an older brother or sister diagnosed with autism is more likely to be autistic as well. Parents may notice that their child’s physical development is different from others. Having a larger than the normal head circumference is said to be an indication of autism in babies. Signs of having unusual facial expressions and gestures can also be noted. Autism Signs Baby


About the Author:
Autism Signs Baby is a proven Autism Solution for your Child.
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