Who should be responsible for helping teens and young adults with Asperger’s and HFA?

Jane, a 21-year old with Asperger’s, had worked as a secretary for her father when he was alive. But when he died and the company closed, she did not seek further work. She carried on living in the family home, which became more and more neglected. Jane enjoyed novels, and was reading Tolstoy's War and Peace when the author met her, but she did not know who to contact to change a broken light fitting or how to change it herself. So she read by candlelight.

Her neighbors thought her weird, and the various doctors who saw her found her uncooperative. They believed that she was simply unmotivated to change. Although none of them said it, there was a definite implication that she was lazy and difficult. Jane continues to be dismissed by professionals as having moral failings, but not impairments.

Adolescence and young adulthood are times of identity change and identity confusion. Understandably, teens and young adults do not want to define themselves in terms of impairments, but in terms of aspirations and desires. In telling a person that she has Asperger’s (AS) or High-Functioning Autism (HFA), it is important to make this an accommodating and not a restrictive intervention.

There is a balance to be struck between (a) being seen as a person with impairments and (b) being seen as someone with an unobstructed and sunny future. In other words, the AS or HFA individual needs to understand that she will have to work harder in certain areas (e.g., social skills acquisition) than her “typical” peers do, yet with appropriate interventions, she can thrive in most areas just as her peers can.

Who should be responsible for helping older teens and young adults with Asperger’s and High-Functioning Autism?

Parents—

The first answer to this challenge is “moms and dads.” Parents readily accept this responsibility because they have felt extraordinarily responsible for their AS or HFA youngster from the time that they realized that she was different, and was in some way vulnerable to others' exploitation and influence.

Parents can – and should – be their child’s greatest advocate. The road to becoming your child’s advocate begins by being as informed as possible about AS and HFA. There are dozens of books, some more scholarly than others, that parents can read to help themselves understand that the autism spectrum disorder was not their fault and to learn patterns of behavior they have come to see in their child, but didn’t know what they meant.

The second part about being an advocate for your child is to pay careful attention to him. Learn his idiosyncrasies and pay attention to the things that work for him, along with the things that don’t. For example, if your child has certain obsessions or compulsions, understand what they are and find out ways to get around them, if needed and if possible.

The Teenager or Young Adult Herself—

Another answer is “the AS or HFA individual herself.” It is true that more and more young people on the autism spectrum are discovering alternative methods to empowerment. The Internet has provided many of these, enabling these teenagers to get in touch with each other by email, discussion groups, or through web pages. Even more helpful, the net provides a means of communicating with others that emphasizes technology know-how and de-emphasizes the subtleties of social interaction, both of which are advantages for people with AS and HFA.

Self-advocacy is another way for young people with AS and HFA to help themselves. Self-advocacy teaches these individuals to identify issues that mean the most to them. It helps them prioritize their hopes and dreams – and to make certain that nothing gets in the way of achieving their goals. Autism is nothing to be ashamed of. It’s a part of who they are, but it does not define them. Once they realize this, and that they are capable and intelligent, young people on the spectrum should be able to step up and take on some of the responsibility of self-advocacy.

Self-advocacy is core communication skill. Being proficient at using this skill means that you express yourself effectively and stand up for your point of view, while also respecting the rights and beliefs of others. This skill can help with stress management, boost your self-esteem, and help earn others' respect.

One aspect of being a good self-advocate is to pay careful attention to yourself. Learn your idiosyncrasies and pay attention to the things that work for you, along with the things that don’t work.

Know your strengths. Young people on the spectrum are often gifted with an above average I.Q. It’s likely that you excel in one or more academic subjects. Also, you probably have an intense interest outside of academics (e.g., music or computers). Knowing your own strengths will help you gain much needed self-confidence.

Recognize and accept your weaknesses. Just as with your strengths, you must also be mindful of your weaknesses.

Psychiatrists—

There are clinical psychologists, counselors, educators, employment specialists, neuropsychologists, occupational therapists, psychiatrists and others who have made themselves into specialists. But there is no group that has accepted that AS and HFA is part of their mission. This means that parents and their “special needs” children are constantly the subject of turf wars in which they find themselves being referred back and forth until someone takes responsibility for their care, or until they give up and break contact with services altogether.

AS and HFA are neurobiologic disorders with a strong heritability. Twin studies suggest that genetic and environmental factors often may interact. In addition, outcome is influenced by social and emotional factors. Thus, AS and HFA would appear to be a psychiatrist’s “bread and butter” – disorders that require the combination of knowledge of brain development, environmental factors, and psychology.

Moreover, there is an association between AS/HFA and psychiatric disorder. One recent study showed that 32% of young adults with an autistic spectrum disorder had been diagnosed with another disorder, most commonly depression (56%). Although autism itself does not respond to medication, comorbid conditions do.

A range of medical disorders is reportedly more common in AS and HFA. These include epilepsy, disorders affecting brain development in childhood (e.g., hydrocephalus, tuberous sclerosis, neurofibromatosis), congenital perceptual disorders affecting early social interaction (e.g., congenital disorders of visual acuity and congenital causes of deafness), and disorders affecting motor control (e.g., myotonia and myopathy).

Given all these considerations, there is a strong case for psychiatrists to take responsibility for young people with AS and HFA. And not just any psychiatrists, but the same psychiatrists who deal with “neurodevelopmental disorders” (i.e., disorders that typically manifest early in development often before the youngster enters grade school, and those that are characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning).

==> Launching Adult Children With Aspergers: How To Promote Self-Reliance

Communication Intervention and Social Skills Training for Kids on the Spectrum

"How can I help my child with high functioning autism to develop some important communication and language skills?"

For most children with Asperger’s (AS) and High-Functioning Autism (HFA), the most important treatment strategy involves the need to enhance communication and social competence. This emphasis on social competence does not reflect a societal pressure for conformity, and it does not attempt to stifle individuality and uniqueness.

Instead, it reflects the clinical fact that most children with AS and HFA are not loners by choice, and that there is a tendency (as these kids develop towards adolescence) for hopelessness, pessimism, and oftentimes, anxiety and depression due to the child’s (a) increasing awareness of personal inadequacy in social situations and (b) repeated experiences of failure to make and/or maintain friendships.

The typical limitations of insight and self-reflection often preclude spontaneous self-adjustment to social and interpersonal demands. The practice of communication and social skills does not imply the eventual acquisition of communicative or social spontaneity. However, it does prepare the child with AS or HFA to cope with social and interpersonal expectations, therefore enhancing his or her attractiveness as a conversational partner or as a potential friend.

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

Below are some crucial suggestions intended to foster relevant skills in this area. These suggestions can be used by parents, teachers and therapists:

1. Encounters with unfamiliar people (e.g., making acquaintances) should be rehearsed until the AS or HFA child is made aware of the impact of his behavior on other’s reactions to him. Certain important strategies (e.g., practicing in front of a mirror, listening to his recorded speech, watching a video of his recorded behavior, etc.) should all be incorporated in a social skills training program. Social situations manufactured in a therapeutic setting that usually require reliance on visual-receptive and other nonverbal skills for interpretation should be used, and techniques for deciphering the most salient nonverbal dimensions inherent in these situations should be offered.

2. Explicit verbal instructions on how to interpret other’s social behavior should be taught and exercised in a rote fashion. The following should be taught in a manner not unlike the teaching of a foreign language (i.e., all elements should be made verbally explicit and appropriately and repeatedly drilled):

• facial and hand gestures
• non-literal communications (e.g., humor, figurative language, irony, sarcasm and metaphor)
• the meaning of eye contact and gaze
• various inflections and tone of voice

The same principles should guide the training of the child’s expressive skills. Concrete situations should be exercised in a therapeutic setting and gradually tried out in naturally occurring situations. All those in close contact with the AS or HFA child (e.g., teachers, coaches, scout leaders, etc.) should be made aware of the program so that consistency, monitoring and contingent reinforcement are maximized.

3. The effort to develop the child’s skills with peers in terms of managing social situations should be a priority. This should include:

• ending topics appropriately
• feeling comfortable with a range of topics that are typically discussed by same-age peers
• shifting topics
• the ability to expand and elaborate on a range of different topics initiated by others
• topic management

4. The child with AS or HFA should be helped to recognize and use a range of different means to interact, mediate, negotiate, persuade, discuss, and disagree through verbal means. In terms of formal properties of language, the child may benefit from help in thinking about idiomatic language that can only be understood in its own right, and practice in identifying them in both text and conversation. It is important to help the child to:

• anticipate multiple outcomes so as to increase the flexibility with which she both thinks about - and uses - language with others
• develop the ability to make inferences
• explain motivation
• predict

5. The child with AS or HFA should be taught to monitor her own speech style in terms of adjusting, depending on proximity to the speaker, context and social situation, naturalness, number of people, background noise, rhythm and volume.

6. Spoken language may be odd. Sometimes, AS and HFA kids don't have the local accent, or they are too loud for a situation, overly formal, or speak in a monotonous tone. If the youngster has a good level of spoken language, parents and teachers should not assume his or her understanding is at the same level.

7. Metaphors (e.g., “food for thought”) and similes (e.g., “as fit as a fiddle”) have to be explained, because these “special needs” kids tend to make literal and concrete interpretations.

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

8. In some cases, language acquisition (i.e., learning to speak) can be delayed. These children make much use of phrases they have memorized, although they may not be used in the right context. A certain amount of translation may be needed in order to understand what they are trying to say.

9. Both verbal and nonverbal communications pose problems for children with AS and HFA. Spoken language is often not entirely understood, so it should be kept simple to a level they can understand. Take care to be precise.

10. Lastly, here are a few additional tips parents and teachers can employ to help the autistic youngster better understand the world - and in doing so - make everyone's lives a little easier:

• Try to get confirmation that the child understands what you are talking about or asking. Don't rely on a stock ‘yes’ or ‘no’ answers.
• Limit any choices to two or three items.
• Keep instructions simple. For complicated jobs, use lists or pictures.
• Keep all your speech simple to a level the child can understand.
• Explain why the child should look at you when you speak to him. Give lots of praise for any achievement - especially when he uses a social skill without prompting.
• Don't always expect the AS or HFA child to “act her age.” These kids are usually immature, so parents and teachers should make some allowances for this.

One of the most significant problems for young people on the autism spectrum is difficulty in social interaction. But AS and HFA also create problems with "mind reading" (i.e., knowing what another person may be thinking). “Typical” children can observe others and guess (through a combination of tone and body language) what is "really" going on. Without help and training, AS and HFA kids can't. This "mind blindness" can lead even the highest-functioning child to make social blunders that cause all kinds of relationship difficulties.

Without knowing why, the child can hurt others’ feelings, act oddly, ask inappropriate questions, or generally open himself up to teasing, bullying, hostility – and eventual isolation. But, by using the suggestions listed above, parents, teachers and other professionals can help AS and HFA children to develop some much needed communication and social skills that will alleviate a lot of these problems.

More resources for parents of children and teens 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

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

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


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

COMMENTS & QUESTIONS [for June, 2016]

Do you need some assistance in parenting your Aspergers or HFA child? Click here to use Mark Hutten, M.A. as your personal parent coach.

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Hi Mark..
I am working on the 4 week program with My Asperger Child ebook & I am excited about the positive changes that I believe I will see.  I am raising my grandson, Tenzin who has been diagnosed with HFA, ODD, anxiety & ADHD.  Tenzin is 10 and is a handful.  After taking the quiz I realize dhow over-indulgent I have become in my quest to avoid the daily battles.  Now I am able to see where I need to change things with him & myself.  I am very interested in your ebook My Out of Control Child.  How do I go about ordering this.

I have also read your Teaching Students with Aspergers & HFA and Teaching Social Skills & Emotional Management.

Thank you for the work that you do in this area.  It really makes a difference.

Namaste...

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Thank you Mark.

At this moment, I am beside myself with worry although I am not fearful.

My son Nicholas, who is 14 has not been diagnosed with Asperger's but I believe he has it.

We live in Trinidad and Tobago but Nicholas is a U.S. citizen by birth.  We returned home 10 years ago.

He has been doing well at school and we always thought he was a bit quirky but fine.

Now he has hit a wall with his studies.  He's accustomed to doing well academically but now he complains of feeling burnout,

is sad and depressed and will simply not study or do any work at all.  Today is the end of year exams and he is suffering severely;

so are we.

There are no known professionals in the field here, although many are knowledgeable about the condition.

Your newsletter and linen of communication is a God send.
Thanks so very much.

Jacqui

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Dear Mr. Hutten,
I work at a Jr/Sr High School in a rural town in Nevada. I am the attendance secretary on top of taking care of the ISS students. I am always having parents come to me all upset and not knowing what to do because their child refuses to come to school and they are a handful at home as well. The parents are always saying they just do not know what to do anymore. I am always researching things on the internet that might help these parents. I came across your site. It sounded pretty good, so I bought the book in hopes that it would have some good information I could pass on to these parents. If everything looks as good as it sounds, I would like to give the parents a copy of the website so they can check it out for themselves and see if it would be of any help to them in dealing with their children.
If you have any other information that might benefit these parents, and would like to send it on, I would appreciate it.
Thank You!

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Hello Mark, I just purchased your handbook. Your YouTube videos and website have gotten me the closest yet to understanding my son's issues. He is very high functioning and not a single teacher or counselor at school has raised a flag yet, but we know something is wrong and we always have. He's been to different social workers / Counselors because of what we thought were bullying tendencies to the point of hurting his twin brother (both physically and damaging/breaking his spirit) - but even the social workers have not had much effect nor given me any feedback that any makes sense. The breaking point that really pushed me to research much deeper online than just the basic "10 signs of Autism" was last week when he had a friend over for a play date (which my son begged for and wanted) but the child ended up going home early, upset and crying because my son just ended up ignoring him and not caring about what his friend wanted to do. And my son just did not 'get it' when I tried to explain, for the millionth time, how friendships and play dates work. It's as if he really wants to have friends and relationships, but when he tries, they fizzle. I ended up forcing my son to call his friend on the phone later that day to apologize and I had to give him the exact words to use ("I'm sorry for hurting your feelings")  - but I now I realize that my son didn't even understand what he was forced to apologize for.

Anyway - my husband and I have a million other stories like this one. Met with pediatrician on Monday and are now in process of trying to get him evaluated for whatever this is. We are very scared and so upset over this.

I will read your handbook and if I could reach out to you going forward it would be great.

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Hello, I am 23 years old, female and I think I might have Aspergers or ADD. I am consulting with someone to get a formal diagnosis. Well, but I have been very high functioning at least till now, but I am finding it very difficult to cope. Could you let me know if you could help me out. Mainly, the thing is I have this urge to keep moving( I have to live in a new city every year), and that has really hurt my social life. And I don't like admitting that I have social anxiety. There is this other problem that I avoid doing my finances or paying my bills and I can never seem to eat meals on time. Also I get easily overwhelmed by minor things. Also I have a degree that I have failed to complete. My parents think I am just misbehaving or taking it too easy but I feel like I am trying so hard and still nothing is working out. So, any help you could provide will be great.
I remember when I was a teenager, I bought a book that explained how to do your daily tasks like grooming, putting on clothes and a classmate laughed at me t, but I really wish I kept that book with me.

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Hi Mark,

Thank you for your quick reply.
It was such a relief to read your info as it keeps things simply clear and just what we need, as my 19 year old wonderful boy is feeling very isolated at university.  It is a common problem for him.
I have not yet told him I think he has Asbergers which I think he has, at the very high functioning end. 
I would be very grateful if you know of any groups or individual communication in put that he could get in London that follows your style or even better if you are running any talks etc in England.
If you could let me know I would be very gratefully.
Thank you once I was at my wits end before reading your info this morning as my son keeps asking me what's wrong with him and why people won't include him or in his words "let him in" socially.

Kind regards, Anne

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Dear Mark

I  purchased your ebook a couple of months ago. I have read it and listened to the audio as well. Your material is the only material I have ever read that exactly describes and identifies with the experience I have had with my son. You have an insight into this subject that is unique. This has given me great hope. Thank you.

I found the audio especially helpful. Listening to the emails sent to you from parents, their experiences with their sons are so strikingly similar to my own situation they made me realise my family is not alone in dealing with these issues.

We live in England. My son is now 23. He was diagnosed with Aspergers at age 5. Growing up he was a difficult child. As soon as he started school the teaching staff began to report difficulties. Basically it was found he just could not learn at the same pace as other children nor could he maintain a happy coexistence with the other children in class. I was constantly being called in through all his school years to help with managing his behaviours.

He left school at 16 with minimal qualification. He at least learned to read and write.

He chose to go to college where he did a vocational work preparation course.

Since leaving there he has had several jobs all of which he lost in exactly the same ways the parents described in your audio material. I.e he appears to sabotage his jobs by exhibiting non cooperative behaviour after a very short period of time. He will deliberately break workplace rules over and over until he is fired.

If I were to describe all aspects of his behaviour over the years and list all the incredible, bizarre, dangerous and distressing situations that the family have lived through with him, it would run to pages and pages and pages. A book in fact.

Living with my son is driving me and my wife towards insanity and our family towards breakup.

I wish your material was available to us when he was young. If we then could have moderated his behaviours by using your techniques I am sure we could have avoided at least some of the disastrous happenings we have experienced. I am trying as best I can to use your techniques now. I am hoping it's not too late to help him change.

To describe the current situation:
He is living in a tent in my back yard. We can't trust him at night in the house. Social services refuse to house him saying they can't place him anywhere. They housed him in various places for nearly a year but he kept being evicted due to his behaviours. Over the past year we have also tried placing him with relatives, even setting him up in a nice shared flat near to one of his workplaces but all ended in utter failure due to his outrageous behaviour.

He fills his days with watching videos on the Internet and playing video games on a console.

When he loses his temper he smashes up his own possessions most of which are things we bought for him. He has destroyed thousands of pounds worth of phones, computers, televisions, games consoles, iPods, bicycles etc. He also smashed up his own car (bought with his disability money). He has also broken much furniture, dishes, doors and windows in my home.

He has self harmed, cutting his arms many times. Recently he has broken his wrist and damaged the other one. He also jumped off a first floor balcony and injured his knee.

On several occasions recently he has injured me, including punching and throwing objects at me. He has also punched his mother and pushed her to the ground on several occasions.

He has called the police out many many times. This is an obsession with him. We can't allow him to posses a phone anymore for this reason and besides, he smashes every phone he gets.

He now has a criminal record for wasting police time and arson.

His mother does most of the caring for him as I have full time job and she recently lost hers due to redundancy.

He has developed a serious drinking problem.

He will not eat regular meals despite all food being provided. Some days he will not eat anything. I am convinced he uses this as a tool to distress his mother.

Generally he is extremely manipulative of the whole family usually by using his bad temper and threats to smash things up as the means of control.

He doesn't seem to be able to function on his own without constant hourly supervision by his mother. This cannot continue because she is on the verge of a nervous breakdown.

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My grandson is 7.  He is a bright kid who has had a tough environment that has improved tremendously over the past 12 months.  He used to have one melt down after another when he was 1-4 years old but has progressed to the point where I have not seen one for over a year and at home he has minimal disagreements with his mother (we did nurtured heart).  The problem is school.  He occasionally has a total meltdown, throwing desks, etc.  The school then calls his mother who has to come and get him.  When she asks what happens they can’t tell her.  When we ask him, he has told me the other kids are “annoying”.  She is so frustrated and afraid of losing her job that she has gotten him prescribed anxiety medication which I do not think is a solution and frankly scares me.  It also is not really helping.  He does not have many friends and the couple he has have behavior problems worse than his, he gets along fine with his family.  His mother, my husband and I are all trying to think of a way to stop the outbursts without being there…do you think this social skills series would help us, help him?  We are hoping to get him back into a regular classroom, the “team” at school complains constantly about his behavior and he behaves close to 100% perfect when he is not at school.  Any suggestions?  The professionals that have worked with him seem to think he has anxiety and PTSD, I am not so sure since he does fine everywhere but school.  He is a middle child, a sister 2 years older and a sister 2 years younger. Thanks!

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My name is Elisa and I am married to an undiagnosed aspergers / autistic man.  I also have some aspe tendencies myself but still need more emotional connection with my husband than he does with me.  I would LOVE to get your ebook, and will if it is the only option, but I have dyslexia and cannot stand to read more than 10 pages of anything.  It is terribly difficult for me to intake info in the written format.  Do you have an option for an audio download for the book or is there a way to download group sessions that address some or most of the book?  I am willing to pay a lot more for an audio version, it's not the money.  Do you have any options for someone like me?

Thanks so very much for creating something that gives us wives' hope.  I truly believe you have strategies that will help us.  After 18 years of near constant frustration, depression, and anxiety - I just want to be able to find a way to be happy with him - if that is even possible.

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Recently l found my son always imagine and copy the character in the cartoon. He is seven years old. Last few weeks, he imagine he is super hero and always fight for weak. His imagination effect his school activities. Sometimes, he even fighting to his friend. I have talked to him. He told me that the super hero need practice fighting. I dun know how l can help him. Cos this made his friend stop playing and keep distance with him!
Please give me some suggestions. Thank you.

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Hi Mark,
    
     My name is Shannon. I won't go into a long-winded story of what why and how just now. I came across your site and wonder if you can help myself and my boyfriend (used to be common-law) remove resent from his 20yr old daughter. My boyfriend (seems weired to call him that since we did live together for 7 years) lacks connection with his daughter and doesn't know what else to do. She won't let him in and resents me greatly. He does not speak my name or have me to the house for fear that she will leave. This is very wearing on our relationship as well.
    
     Can you help us and do you do Skype consults? I feel like my BF would be more receptive to a phone or Skype call rather than reading or listening to CDs.

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Hi Mark,

Thanks for being so honest! Same thing happens to me.

My son is 19 years old and has some very mild signs of Aspergers, but enough for his peer group to exclude him quiet a bit, except for a couple of friends when he is back for college.

He found it very hard at college being rejected by people his own age ie not included.

It's tough.

When he was at school he saw a psychologist and I paid privately the Assessment said he showed some mild features of Aspergers.  He saw a speech therapist and ot.

We live in London and would be very grateful if you could recommend any one like you to give him. And or me a bit of advice re blending in a bit more.

Nicks voice tone is sometimes a bit high and can sound a bit immature.  Also he can sometimes look a little ridged.

Although small things I think this does not help him re being accepted by his peer group.

Any advise would be very welcome as we have not found anything here that has hit the nail on the head like your article.

He gets very sad and angry especially about rejection and not having a girlfriend. Help! I do not have the answers, but he is great fun and a really interesting person.

Many thanks

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Hi Mark,

I hope that it is ok to email you. I'm sure you are a very busy man. I am a parent from the UK and came upon your webpage through FB yesterday.

I was wondering if you had any experience of working with children who are on the spectrum but are also profoundly deaf?

My daughter is 8 years old and was profoundly deaf at birth. She was bilaterally implanted at 19 months. We spent 4 weeks at the John Tracy Clinic in Los Angeles when she was 3 years old which was hugely beneficial. Once we returned to the UK, we enrolled with a fortnightly AV programme until she was 6 years old.

Looking back I was particularly naive when looking at my daughters behaviours and difficulties and up until 2 years ago, I believed that it was due to her hearing loss.  Having now met more and more hearing impaired children, it is more clear that her issues are not solely due to her hearing loss.

I am taking her to be assessed for Pathalogical Demand Avoidance/ASD in September. I have believed for a while now that she either has Aspergers or PDA. PDA strategies have helped enormously with meltdowns.

I have read several of your blog posts now and will continue to digest over the weekend.

One thing I was unsure of, is the involvement of Speech and Language Therapists? Do they assist with the social problems that these children suffer with?

Look forward to hearing from you


Laura

How to Have a Meltdown-Free Summer Vacation: Tips for Parents of Kids on the Spectrum

In this video, we are going to look at the most important strategies parents of high-functioning autistic children can use to ensure that summer vacation goes smoothly.

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

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism

Children on the Autism Spectrum and "Medication Phobia"

"Our daughter (autistic) is suppose to take 2 meds everyday, but always has a meltdown whenever we try to give them to her. She is so afraid of the side effects that she can’t put her anxiety aside long enough to take them. Is this common? What can we do? She has to take these two prescriptions according to the doc."

While lack of awareness by parents and their Asperger’s (high-functioning autistic) child of adverse drug reactions can have serious consequences, having a phobia of medications can also have serious harmful effects on the child’s health (e.g., problems with medication compliance, refusal of necessary drug intervention, etc.).

Medication phobia can also present in moms and dads who are concerned about giving medications to their youngster, fearing that the medications will do more harm than good.

Fears of taking medication is prevalent in children who have experienced unpleasant withdrawal effects from psychotropic drugs. Also, medication phobia can be triggered by unpleasant adverse reactions to drugs that are prescribed inappropriately or at excessive doses. Furthermore, due to sensory sensitivities, many children on the autism spectrum have great difficulty with – and a fear of – swallowing pills.



The nature of Asperger’s and high-functioning autism (HFA) introduces significant challenges, particularly when using drug treatments. Building a relationship and gaining the child's trust can be hard to accomplish. Many young people on the autism spectrum feel forced to take medication and commonly recoil from the idea of drug treatment. Some are so frightened of the effects of medications that they can’t put those fears aside long enough to try one.

 A real paradox occurs in the area of anxiety. Many, if not most, children on the spectrum experience anxiety. However, the degree of anxiety that makes it appropriate to consider medication for it can also interfere with the child adhering to a prescription. Despite the enormous distress the child’s anxiety symptoms generate, he or she may not be able to put aside worries about the medication. Parents may be the only people the child will allow to counter these fears.

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

Many of the difficulties associated with anxiety (e.g., behavioral problems) are more distressing to those around the child (e.g., parents, siblings, teachers, etc.) than to the child herself. Children with Asperger’s and HFA commonly lack the ability to perceive the signals of comfort or pleasure of others or, once acquired, to use others' emotions to guide their behaviors. Lacking this ability, these children struggle with the initial fears related to taking medication or entering into other therapy that can help them get along with others. Often they can’t see why they should be required to take a particular drug simply because others are upset. Threatening an unpleasant consequence is usually ineffective. These “special needs” kids are often willing to accept dreadful consequences rather than compromise a rigidly held rule, contain a pressing urge, tackle managing an anxious feeling, or yield control to someone else.

Another hurdle is the limitations children with Asperger’s and HFA have in identifying their own internal mood states and emotions. As a result, parents, teachers and other adults may be unable to gauge whether the child experiences less subjective anxiety, anger, or sadness. The child's emotional “comfort” may not be available to the therapist for rating improvement. To monitor progress, the therapist may have to draw on multiple observations, rely more or less exclusively on the child's somatic experience, and to use highly concrete measures.

An associated obstacle is the deficits children on the autism spectrum have perceiving and understanding other's intentions, wishes, or needs. This blindness to others often contributes to the child’s inability to grasp how his reactions contribute to a bad result. More often, the child believes he is being victimized. The teasing and bullying that the Asperger’s or HFA child often has to endure at school only adds to this. For this child, it may be impossible to tell the difference between (a) the natural consequences associated with his choices and (b) mistreatment by others. Nonetheless, the child is likely to be oblivious to how his actions contribute to a chain of events that end in a meltdown, outburst or aggression – or even to believe that the outcome should be prevented in the future. This blindness also produces a tendency for the child to accuse those around him of causing problems. Faulting others is highly characteristic and is a direct result of the disorder.

Many children with Asperger’s and HFA display profound weaknesses in the ability to observe sequences of events and transactions accurately, and in understanding the “logical” responses of those around them. These kids can be highly concrete. The “big picture” of behaviors and emotions is often lost to an excessive attention to small changes in circumstances or minor details. They often have a flawed sense of proportion (e.g., premeditated, forceful retaliation may be viewed as a justified response to someone else's small gaffe).

In addition, kids on the autism spectrum often are rigid in their behaviors with inflexible routines, dedication to unnecessary rules, or ritualized behaviors. Sometimes these may be no more than a minor irritation to others, but when severe, they can obstruct action and exasperate those around them. Severe rigidity can be highly frustrating to others, and attempts to counter it may produce aggressive reactions from the child. She may perceive that “if only my parents would let me do what I want,” there would be no problems at all.




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

Several other obstacles are related to the issue of medication:

1. No drug influences the core pragmatic social deficits (e.g., misinterpreting cues, failure to appreciate social cues and nuances, etc.). As a result, there is no one algorithm to follow that targets the primary source of impairment or the greatest source of difficulty for the Asperger’s child.

2. There is an absence of high quality, valid studies of the efficacy of different drugs for specific symptoms in this population. Most of the studies are case reports or small-scale, open, unblinded trials. This requires the clinician to take findings from studies of other disorders in the hope that the results translate to Asperger’s. This presumption is entirely theoretic at this point. Much of the time, a clinician has no way to gauge the child’s response in comparison with others with this disorder. Global functioning may or may not be meaningfully improved.

3. A third obstacle is the absence of treatment and outcome studies of Asperger’s with comorbid conditions. For instance, it may be erroneous to presume that mood dysregulation and the response to mood stabilizers in the context of Asperger’s is identical to bipolar disorder in an otherwise ordinary teenager. Nearly all treatment studies of other childhood disorders exclude children with PDD spectrum disorders. As a result, when an Asperger’s child appears in the clinician's consulting room, unless one has the luxury of a previous relationship and a sense of that child's baseline functioning, one can’t know what the child looks like when the comorbid condition is “resolved.” Most of the core social impairments are likely to remain, although functional gains are possible.

Treatment of Medication Phobia—

Treatments for medication phobia can be approached from several different angles. For example:

• Practicing relaxation techniques (e.g., deep breathing, yoga, muscle relaxation, etc.) can help the Asperger’s child deal with the emotional and physical symptoms of medication phobia.
• Learning to keep negative thoughts at bay is helpful, because a negative train of thought can initiate the medication phobia. 
• If choking while taking medicine is the child’s fear, then the physician can give options for liquid or crushed medicines. 
• Children with medication phobias can learn self-help methods to deal with the worst of the symptoms. Getting informed about the phobia is the first step in overcoming the fear.
• Cognitive-behavioral therapy, more commonly known as exposure therapy, may be the best approach for dealing with medication phobia. Using the exposure therapy method slowly exposes the child with his phobia first through the mind in therapy sessions, and then in real life situations. Depending on the severity of the case, therapy can help the child cope with his fear and get his health back on track.

Being afraid of taking medicine - or of suffering adverse reactions - is not uncommon for children on the autism spectrum. However, by utilizing the treatment methods listed above, parents can help their child gain a comfort level such that taking prescribed medication is perceived as a rather harmless endeavor.

More resources for parents of children and teens 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

COMMENTS:

•    Anonymous said…  I have a 7 year old who won't take medicine. I hope he can learn over the years ✨🙏🏼✨
•    Anonymous said…  Mine wouldn't take any meds until he could take a pill (this included antibiotics). He would actually throw up on me if I forced them. I had to be really creative in hiding the meds in foods and drinks. I taught him to swallow pills using mini m&m's when he was 4. Now he takes a daily medication with ease.
•    Anonymous said…  My daughter is 15 and takes meds really well now. She knows if she doesn't take those meds her actions are bad and she has withdrawals. I would talk to a doc and see if anything liquid or other possibilities are available
•    Anonymous said… Carbonation helps to float the tablet in their mouth. It is how I had to teach one of my kids to swallow a pill. She could not do it with regular water and still cannot. We practiced with Tic Tac's a lot.
•    Anonymous said… Dispersible tabs here and a capsule emptied into water every single morning. No way he'd ever swallow tablets. And his melatonin drops have to be made up without flavouring......
•    Anonymous said… Fascinating reading everybody's comments about swallowing. My son cannot swallow any form of tablet. Puts it on his tongue and then just freezes and panics. Interesting that so many of you have the same issue. Another thing I have learnt today.
•    Anonymous said… His OT worked with him on swallowing 'pills', mini MM's and regular size cut in half. Now he Can swallow the small gel oval shaped laxatives, but doesn't want to. Currently he is applying DoTerra Oils himself.
•    Anonymous said… I can't even get my son to take melatonin. I hide it in chocolate milk. He had eye surgery and it took 3 of us to hold him down just to get the woozy meds in to him, which he then spit half of it out and in to the nurse. He was 5 then, he's 8 now.
•    Anonymous said… I have a 12 year old who won't take medicine.
•    Anonymous said… Mine doesn't take medication. I think it's only kids with Adhd that are medicated isn't it? Or kids with excessive stimming?
•    Anonymous said… Mine is afraid to swallow the capsules. I break them open over a spoon of yogurt and he eagerky takes them. He says they allow him to stop and think.
•    Anonymous said… My 16 year old Aspie takes only brufen willingly. No tablets . Antibiotics only yellow one for kids. Thank God she hasn`t needed anything else so far.
•    Anonymous said… My daughter (8 1/2 yrs old ) refuses to take tablet form she thinks she going to choke and will not let u put it in her mouth so we always get liquid which she takes no problem.
•    Anonymous said… My daughter is the absolute worse at taking medicine. I am very thankful we do not have daily meds and that she is very healthy.
•    Anonymous said… My son (7.5 YO) has epilepsy medicine, and he hated the liquid form, but we slowly introduced the pill form instead. It was by a process of putting pill taking in the daily routine, and making sure it was accompanied with a nice drink, i.e. apple juice or milkshake, and occasionally some bribery, i.e. a toy car, a Lego figure, that he now takes it with very little fuss. Routine and patience were rewarded.
•    Anonymous said… My son hates taking his- luckily we get capsules and can mix it into his breakfast drink. He hates taking it but he told me as long as I don't see you putting it into my drink it's fine.
•    Anonymous said… My son is afraid of gagging. We have to break open the capsule and he swallows the beads, but occasionally he will gag and throw up all the medicine. That's his Ritalin. He doesn't have an issue with his seizure medicine that is an orally disintegrating tablet. He likes the minty flavor also.
•    Anonymous said… My son isn't afraid to take his but he doesn't like it. And he will occasionally refuse to take it when he's mad at me, as though he's punishing me. But he's been pretty good about it the last few years.
•    Anonymous said… My son refuses to take medication- terrified what it might to him
•    Anonymous said… My two aspie kids will NOT take meds. They are both horrible with meds. We have to hold them down to give them anything
•    Anonymous said… No afraid to take it but complained because he only liked the circle ones not the oval ones. Something about the circle ones go down better than the oval ones. I had his doctor explain to him that he needed to take them regardless off shape or color and that seemed to work.
•    Anonymous said… Oh wow!! Our very recently diagnosed 6 year had his tonsils out a fortnight ago. We had medication battles every two hours!! Thankfully he is better today and it's all over. We had no idea that this was common to HFA kids!!!
•    Anonymous said… Terrified of any and all meds - yes yes yes - so is his dad.
•    Anonymous said… Will not swallow a pill. Chews his Guanfacine. My friend is a pharmacist and is looking into compounding for him
•    Anonymous said… Yep! It's a nightly battle. This week the doctor told us to just hide it.
•    Anonymous said… Yes he is very dubious. Its quite a process. It takes lots if talking. Spoon was best we found, syringe a bit scary. And we just give it in small amounts with sips of water in between until dose taken.
•    Anonymous said… Yes my son would try really hard to take it. He found it very difficult. When he was about 9 I put $2 on the container which he could have if he got a tablet down. He did it for the first time with food and since then it's been a lot easier
•    Anonymous said… YES! We have tried EVERYTHING to mix it with. The only thing that sometimes works is offering Pokemon cards (it's his thing right now). We put them in sealed envelopes which he has decorated. Then we make it a big deal "Which one will you choose?" thing. Sometimes we just can't get him to take it. We used to have two of us hold him down but then when he was willing to take it, he would want to "play" that he wouldn't and ask us to hold him down.
•    Anonymous said… Yes, he refuses all medications.
•    Anonymous said… Yes, I have struggled the past 3 years for my now 17 year old to take his required Thyroid medication. He claims he has a fear of swallowing and chocking on it. Even if we crush it. Very frustrating. I have tried mixing it in food, but he always knows, he is 17 after all.;-) We have therpists coming twice a week to work with him on this, and he does great for about a month, than he stops taking it again. Trying to figure out what more he fears about this medication, sadly, he can't function without it as he sleeps 24/7 when he doesn't take the meds. And yes, he flat out refuses it. He has learned over the years to just answer "I will take it later on my time" to get us off of his back. And later never happens.
•    Anonymous said… Yes. My 8 yr old boy was scared to take anxiety meds. Luckily it came in a liquid (and he didn't mind the taste) and I explained that I take meds too. So we take them together. That seemed to get him past it.

Please post your comment below…

Is a Formal “Diagnosis” of ASD Helpful or Harmful?

"After researching the info on this site, my husband and I believe our child is on the autism spectrum. I'm all for going to a doctor to have him diagnosed, but my husband is dead set against it because he thinks our son will be discriminated against once he has 'the label'. SO... my question is does a diagnosis cause more harm than good?"

Diagnosis has traditionally been the route by which children with Asperger’s (AS) or High-Functioning Autism (HFA) and their parents have accessed specialist services. But this tradition has grown out of the services for kids on the autism spectrum who were severely disabled by their disorder under all circumstances. The group of children with AS and HFA include those whose social impairment is arguable.

What about the father whose child is diagnosed with AS, and his wife begins to think of her frustrations with her husband during the marriage? Does the husband become socially impaired because he is suspected of having AS? Is a timid father with an eccentric manner who is nevertheless devoted to his wife and youngster socially impaired? Is a loner with a passionate interest in old diesel engines socially impaired?



Checking off the boxes is not sufficient for making a diagnosis. Making a diagnosis has to result in a useful product for the client. There is no hard and fast rule about whether a diagnosis of AS or HFA will be useful. A decision needs to be made in each case, usually following an open discussion about what benefits or costs the client anticipates from a diagnosis. And the situation may change.

An AS or HFA teenager who is facing unemployment because he is acting strangely and whose routines at home are becoming a major source of harassment for his mom and dad, may in a year or two be coping well and happily with another job and be a pleasant (if eccentric) house companion. Although a diagnosis might have been useful on the first occasion, it may be unhelpful on the second.

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

There are many other conditions in medicine that are dimensional and not categorical, and that may dip in and out of the pathologic range (e.g., hypertension). They require a different kind of management. The family physician must remember that his patient had a raised blood pressure once, and that it needs to be checked from time to time without treating the patient as if he or she has a current disorder.

For psychiatric services dealing with people with AS and HFA, this translates into being able to maintain contact with grown-ups with AS and HFA, perhaps over long periods and without specific treatment; or, alternatively, it translates into enabling people with AS and HFA to access services for themselves and giving them the means to decide when it is in their best interest to do so.

People with AS and HFA may need help particularly during developmental transitions and during crises. Specialist psychiatric help may not be needed at these times, although help from someone who is knowledgeable about autism spectrum disorders and comfortable relating to the affected individuals is important. However, there are some crises that call for specialist psychiatric or psychologic help. These include crises associated with psychiatric comorbidity and forensic problems.

AS and HFA can be misdiagnosed as a number of other disorders, leading to medications that are unnecessary – or that worsen behavior! For example, there is much overlap between AS and NLD. Both have symptoms of precocious reading, verbosity, and clumsiness. But, they differ in that kids with AS have restricted interests, repetitive behaviors, and less-typical social interactions. Diagnostic confusion burdens children and their parents and may cause them to seek useless therapies.




Disorders that must be considered in a differential diagnosis include:

• attention-deficit hyperactivity disorder
• depression
• multiple complex developmental disorder
• nonverbal learning disorder (NLD) 
• obsessive compulsive disorder
• other pervasive developmental disorders (e.g., autism, PDD-NOS, childhood disintegrative disorder, Rett disorder)
• schizophrenia spectrum disorders (e.g., schizophrenia, schizotypal disorder, schizoid personality disorder)
• semantic pragmatic disorder

Tourette syndrome (TS) should also be considered in differential diagnosis. Other conditions to be considered in the differential diagnosis include:

• bipolar disorder
• birth trauma
• conduct disorder
• Cornelia De Lange syndrome
• dyslexia
• Fahr syndrome
• fetal alcohol syndrome
• fragile X syndrome
• hyperlexia
• leukodystrophy
• multiple sclerosis
• selective mutism
• stereotypic movement disorder
• traumatic brain injury
• Triple X syndrome

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

Diagnosis may be particularly helpful if it results in services provided to the affected child in the area of social skills training. Due to social skills deficits, children with AS and HFA find themselves socially isolated. Reasons for this include, but are not limited to, the following:

• Chronically frustrated by their repeated failures to engage others and form friendships, some kids on the autism spectrum develop symptoms of a mood disorder that may require treatment.
• Social skills deficits are largely responsible for the impression of social naiveté and behavioral rigidity that is so forcefully conveyed by these children.
• The communication style of children with AS and HFA is often characterized by marked verbosity. The youngster may talk incessantly (usually about a favorite subject) often in complete disregard as to whether the listener is interested, engaged, or attempting to interject a comment, or change the subject of conversation. Despite such long-winded monologues, the AS or HFA child may never come to a point or conclusion. Attempts by the listener to elaborate on issues of content or logic, or to shift the interchange to related topics, are often unsuccessful.
• Their poor intuition and lack of spontaneous adaptation are accompanied by marked reliance on formalistic rules of behavior and rigid social conventions. 
• There is a lack of contingency in speech that is a result of (a) the one-sided, egocentric conversational style (e.g., unrelenting monologues about the names, codes, and attributes of innumerable TV stations in the country), (b) failure to provide the background for comments and to clearly establish changes in topic, and (c) failure to suppress the vocal output accompanying internal thoughts. 
• They may be able to describe correctly (in a cognitive and often formalistic fashion) other people's emotions, expected intentions, and social conventions; however, they are unable to act on this knowledge in an intuitive and spontaneous fashion, thus losing the tempo of the interaction. 
• They may express an interest in friendships, but their wishes are invariably thwarted by their awkward approaches and insensitivity to the other person's feelings, intentions, and nonliteral and implied communications (e.g., signs of boredom, haste to leave, and need for privacy, etc.). 
• They may react inappropriately to the context of the affective interaction, often conveying a sense of insensitivity, formality, or disregard for the other person's emotional expressions. 
• They typically approach others, but in an inappropriate or eccentric fashion (e.g., they may engage the listener in one-sided conversation characterized by long-winded, pedantic speech about a favorite, unusual and narrow topic).

Social skills training that would effectively address the issues listed above would suggest that the advantages outweigh any disadvantages of receiving a formal diagnosis.

There are positives and negatives associated with a psychiatric diagnosis – and the diagnostic process generally. Unlike most physical disorders, there is a higher degree of uncertainty attached to a psychiatric diagnosis. The systems of classification that have been developed attempt to reduce this uncertainty, but personal interpretations still play a huge factor. And when a diagnosis is reached, there is the problem of “labeling.”

Labels (i.e., the diagnosis) applied to “special needs” children suggest they are different. To those unfamiliar with autism spectrum disorders, these kids may be viewed as abnormal, making them feel distrustful or anxious? The label itself can result in a self-fulfilling prophecy (i.e., it can result in the child viewing himself as abnormal) and can bias the way parents, teachers, and other adults view the child.

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

In any event, there are times where a diagnosis is helpful, and there may be times when the child or teen is better off without the “label.” The decision to seek a formal diagnosis is ultimately up to parents.

In the case of an adult, the decision should be his or hers alone. Diagnosis as an adult can be a mixed blessing. Some people decide they are O.K. with being self-diagnosed and decide not to ask for a formal diagnosis. However, for those who DO want a formal diagnosis, there may be a variety of benefits.

It’s never a bad idea for an individual to increase self-awareness in order to capitalize on strengths and work around areas of challenge. Knowing about AS or HFA gives the individual an explanation, not an excuse, for why his or her life has taken the twists and turns that it has. What one does with this information at the age of 20, 30 or 70 may differ, but it is still important information to have in many cases.

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

==> 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