Introducing Ruth, an Adult on the Autism Spectrum

I recently asked adults and teens with autism spectrum diagnoses to share their stories.  I'm delighted to say that I've already received one wonderful submission from Ruth, a 23-year-old from Scotland.  Ruth was diagnosed with autism as an adult, and her experiences may ring a bell for many readers.  If you're a teen or adult on the spectrum - or love someone who is - please feel free to send me your story as well.  Here's the info you need to get started!

Ruth's Personal Story

RuthI'm 23 now and I wasn't diagnosed with Asperger's Syndrome until I was 21 years old. All my childhood I was told I was too quiet, too shy and too passive.

I was bullied throughout school but it wasn't until I'd left and started training to be a primary teacher at university that I started to have more serious problems. By second year I was getting extremely anxious and began failing my teaching placements. I could interact with the children fine, but just panicked when I had to talk to the teachers and tutors. At the end of my third year I got placed into academic suspension. I went and did Camp America over the holidays but I couldn't cope with trying to be around other people 24/7 and got sent home early.

I ended up basically having a breakdown and turned to a university counsellor for help. She was the first person who seemed to understand me. From there I saw a psychiatrist, was misdiagnosed with social anxiety disorder and spent 10 weeks in the local Priory hospital as a day patient. Being forced through hours of group therapy - 4 hours, 5 days a week - was like torture to me and I ended up developing depression.

I spent the year after seeing the university counsellor and psychiatrist. It was then that my counsellor started noticing I had traits of Autism Spectrum Disorder (ASD) - that I was extremely passive, got very anxious about communicating, didn't cope well with change and had certain sensory hypersensitivities, such as noise and bright light. Several months later she convinced my psychiatrist to refer me to the Autism Resource Centre that provides the diagnostic services for the whole city. After an assessment that stretched over 4 months I was finally diagnosed as having Asperger's Syndrome.

Initially I had very mixed feelings about my diagnosis. Part of me was really happy that I'd finally found out why I was struggling so much and that I wasn't crazy like I was starting to fear! The other part was I guess in denial. I just kept thinking if I am autistic why has it taken 21 years for anyone to notice? My friends and family seemed to be in denial as well. My mum in particular couldn't really process the information and kept saying 'yeah, but it's just mild, isn't it?' I suppose it took me about a year for it to actually sink in. I've always loved working with kids on the autism spectrum and now I know why I can relate to them so much.

The way I like to think about it is: So I have difficulties with social interaction and communication... so what? It doesn't change who I am. I'm still me. I've always been like this.

I have learnt strategies to help me with certain aspects of my autism. Since being diagnosed I no longer feel as guilty turning down the invite to a party or social gathering I know I won't cope with. I wear headphones and listen to my iPod when I am outside to drown out some of the background noises. I carry around earplugs in case the noise level becomes unbearable. I was assessed by an optician who specialises in sensory processing and now wear blue tinted glasses. I also have an 'autism alert' card from my council which I carry with me and can use in an emergency/if I have a meltdown.

It wasn't all good news though. Despite getting my diagnosis of ASD almost 2 years ago, my mental health difficulties didn't magically vanish like I'd been hoping they would. In fact, my problems actually got worse. I was assessed by a psychologist over the course of a horrendous 4 month period. They knew about my ASD and previous social anxiety disorder diagnosis but still insisted that I was perfectly able to communicate my thoughts and feelings by speaking to them- all I had to do was try harder. This of course was complete rubbish and I became so distressed that I was actually suicidal. At this point they decided to tell me that they couldn't help me and that basically they had no idea what to do. I felt completely abandoned. I was passed onto my community mental health team- who also had no clue how to work with someone on the autism spectrum. The past year and a half has been full of ups and downs muddling through sometimes with my community psychiatric nurse and psychiatrist supporting me and other times with me trying to teach them.

I have recently been diagnosed with Emotionally Unstable Personality Disorder- Borderline Type (otherwise known as Borderline Personality Disorder or BPD). To say that being both autistic and borderline was easy would be a complete lie. Some days I struggle to get out of bed. It's hard having mental health difficulties on top of being autistic and having communication difficulties. Psychological therapies are designed for people who can talk about their problems, not people like me who become practically mute around professionals!

I really wish that health professionals and the general public had more awareness of what ASD actually is. There needs to be a lot more information out there about older children, teenagers and adults. Autism is a lifelong condition. Autistic children turn into autistic adults. Everyone needs to know how very different two people on the spectrum can be. We're not all sitting in a corner rocking in our own little worlds. Some of us are very successful people and you wouldn't even guess that we have any difficulties at all.

Introducing Ruth, an Adult on the Autism Spectrum originally appeared on About.com Autism on Sunday, July 31st, 2011 at 09:36:23.

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An Invitation to Teens and Adults with Autism Spectrum Disorders: Tell Your Story on About.com

While autism spectrum disorders are usually diagnosed in childhood, autism does not disappear when people hit the magic age of 21.  In fact, more and more adults now have autism spectrum diagnoses, and the numbers will grow dramatically over the next few years.

Despite the fact that autism is a lifelong challenge, most websites, books and public presentations about autism focus on very young children.  It would be easy to get the impression that only infants, toddlers and elementary school students can be autistic!

This site has been as guilty as any in selecting far too many photos of adorable children to represent "the autism spectrum."

Now, I'd like to take a positive action to right the balance!

If you're a teen or adult with an autism spectrum disorder (or you love a teen or adult with an autism spectrum disorder), you are invited to tell your story on the Autism at About.com blog.  Here are the details:

I will publish your personal story, memoir or blog post, as written, provided that it:

  • Is no longer than 1,000 words
  • Does not contain any four letter words or personal attacks
  • Does not contain any ads or recommendations to patronize a particular therapy or therapist

You are welcome to include up to two photos with your submission, provided that you have the rights to the image.  If you do send a photo or photos, please include a caption and a credit.  There's no obligation to send a photo.

Send your blog, story, or memoir to autism.guide@about.com - and I'll publish it right here.  I'll let you know right away that it's up, and I'll promote it on my facebook site.  You're welcome to promote as you see fit!  Please write me, too, with any questions.


An Invitation to Teens and Adults with Autism Spectrum Disorders: Tell Your Story on About.com originally appeared on About.com Autism on Saturday, July 30th, 2011 at 18:45:33.

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Chiropractic Care for Spinal Whiplash Injuries

Chiro.Org Blog: In the Woodward study, 93% of the 28 patients studied retrospectively were found to have a statistically significant improvement following chiropractic care. [1] Chiropractic care in this study consisted of spinal manipulation, PNF and cryotherapy. Most of the 28 patients had prior treatment with NSAIDs, soft collars and physiotherapy. The average length of time before the patients began chiropractic care was 15.5 months post-MVA (range of 3-44 months).

Fueling the Fire: Autism as a "Fashionable" Disorder

Dr. Allen Frances was among the lead doctors involved in creating the DSM-IV - the diagnostic manual which invented the autism spectrum we know today.  Asperger syndrome first appeared in that manual, as did the most recent incarnation of a disorder called Pervasive Developmental Disorder Not Otherwise Specified.  Typically, people with Asperger syndrome have strong speech and language skills but impaired social communications skills along with sensory dysfunction at some level.  People with PDD-NOS may be very similar to those with Asperger's - or may have some but not all of the symptoms associated with the most severe "autistic disorder."

Frances is not happy with the way in which the DSM-IV has been used and, in his opinion, abused. The new DSM 5 is due to come out in 2012 with the Aspergers and PDD-NOS diagnoses removed in favor of a more specifically described disorder called Autism Spectrum Disorder.  Language delays are no longer among the criteria for the new ASD, and it is unclear whether and how intellectual challenges (mental retardation) will be treated relative to the "new" autism.

In a recent blog post on Project Syndicate, Allen writes about what he terms the "Autism Generation."  In his opinion, the diagnostic criteria for which he was largely responsible have led to a huge movement toward over diagnosis and misdiagnosis.  While there is probably a small genuine rise in the incidence of autism overall, he says, the biggest problem is that autism has become a "fashionable" disorder:

The most likely cause of the autism epidemic is that autism has become fashionable - a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.

This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.

The Korean study paid no attention to the bias that haunts all epidemiological studies, which always overestimate pathology rates by including as disorder even very mild presentations that do not have clinical significance. It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.

If Frances has read anything produced by or about the autism community in the last ten years or so, he surely knows that what he's written fits the category of "fighting words."  Not only because plenty of people will disagree with his perspective, but also because many will, in fact, agree wholeheartedly.

On some points, Frances is not entirely off the mark.  I am sure that the broad and general terms used to define autism spectrum disorders in the DSM IV are too vague and too inclusive to be terribly useful.  And I am sure that celebrities such as Jenny McCarthy, Jim Carrey and many others have played a big role in raising awareness of the term autism and thus increasing the likelihood of diagnosis.  There's no doubt that many people diagnosed with autism today would have had a different diagnosis or no diagnosis at all 30 years ago.

On the other hand, I know no parent who would choose to have a child with a "smidgen of autism" receive a full-blown autism diagnosis.  And its hard to believe that there are legions of doctors out there ready to hand out diagnoses to any child who builds a tower of blocks.  The idea that "services and entitlements" are sufficient to incite a diagnostic tidal wave seems absurd.   And while there may be a handful of adults who self-diagnose based on slight evidence, those self-identified adults aren't even counted in the statistics.

I'll be interested to hear others' perspective on Frances' piece.  Where is he accurate?  Where is he overstepping the truth?

More on Autism and the DSM IV and 5

How Changes in Autism Diagnosis Will Affect Your Life

The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will make sweeping changes to the criteria for diagnosing autism. What will these changes mean to you and the autism community as a whole?


Why Asperger Syndrome Will Disappear

The new diagnostic manual (DSM 5) will be put into practice in 2013. When that happens, the term Asperger syndrome will disappear from diagnostic literature. Find out why.


Will New Diagnostic Criteria Mean My Child with PDD-NOS Is No Longer Autistic?

When the American Psychiatric Association changes its diagnostic criteria for autism spectrum disorders, many people will cease to qualify as autistic.


Will Children with Intellectual Delays No Longer Be Diagnosed with Autism?

How will the new diagnostic manual, due for publication in 2013, impact your child's autism diagnosis?


Fueling the Fire: Autism as a "Fashionable" Disorder originally appeared on About.com Autism on Thursday, July 28th, 2011 at 09:26:44.

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Women With ADHD: Hormonal Changes Can Affect Symptoms

Normal hormonal changes that women experience throughout their lifetime can affect ADHD symptoms. Puberty, the monthly menstrual cycle, pregnancy, perimenopause, and menopause - all can result in changes in the way your symptoms present.

Please share about some of the differences you have noticed in your symptoms in relation to hormonal changes.

Share Your Experiences

Photo © Microsoft

Women With ADHD: Hormonal Changes Can Affect Symptoms originally appeared on About.com ADD / ADHD on Wednesday, July 27th, 2011 at 23:14:16.

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Adorable Autism

What does autism look like?

Google autism and images, and you'll find hundreds of "autism" photos and images.  Remove all the images of puzzle-piece ribbons and bows, and take out the photos of Jenny McCarthy, various autism experts at podiums, and Sarah Palin at an autism fundraiser.

What's left?

The entire autism community is represented by photos of ...  children.  And not just children.  Adorable children.  Adorable children with big eyes, all under the age of eight and most under the age of five.

Most of the kids are blonde.  Some have cute puppies with them, while others are being hugged by caregivers.  A few are in "typical" autism poses: playing alone with stacks of blocks or toy trains.

It's certainly an inspiring sight.  But somehow it doesn't seem to be reflective of the reality of autism.

Some folks in the autism blogosphere have suggested that neither severe autism nor adult autism "sell."  That only high functioning, adorable autistic kids are likely to move the public to support insurance programs, entitlements or school programs for people on the spectrum.

Do you agree?

Note: Taking a look at my own site, I realize that I'm guilty of doing exactly the same thing: whenever the topic is "autism" as opposed to "adult autism," I use pix of young children.  What's your opinion on that point?  Should I be looking for a better adult/child balance?

Adorable Autism originally appeared on About.com Autism on Wednesday, July 27th, 2011 at 14:15:05.

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Whiplash & Chiropractic

Chiro.Org Blog: Whiplash is an enigmatic injury. We spend billions of dollars each year to treat it. Yet many lawyers, legislators, and medical doctors deny its existence. It affects millions of people around the world, yet research is severely under-funded. It is a largely preventable injury, yet we do little to prevent it. Fortunately, times are changing as whiplash enters a new phase of research and understanding.

Symptoms of Adult ADHD

"Adult ADHD seems to be minimized a lot, but I am wondering if I have it. What are some of the problems and symptoms commonly associated with ADHD in adults?" --About.com reader

Read Response: Symptoms of Adult ADHD

Photo © Stockbyte

Symptoms of Adult ADHD originally appeared on About.com ADD / ADHD on Tuesday, July 26th, 2011 at 12:03:10.

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Sleeping fMRI May Diagnose Autism Earlier

According to a new Israeli study published in the journal Neuron, fMRI studies of sleeping toddlers can detect autism with about 70% accuracy.  The finding is described in a Newswise story:

In sleeping autistic toddlers, the fMRI scans showed lowered levels of synchronization between the left and right brain areas known to be involved in language and communication. This pattern was not seen either in children with normal development or in those with delayed language development who were not autistic. In fact, the researchers found that this synchronization was strongly tied to the autistic child's ability to communicate: The weaker the synchronization, the more severe the symptoms of autism. On the basis of the scans, the scientists were able to identify 70 percent of the autistic children between the ages of one and three.

Dr. Dinstein says, "This biological measurement could help diagnose autism at a very early stage. The goal for the near future is to find additional markers that can improve the accuracy and the reliability of the diagnosis."

A few notes to bear in mind relative to this finding:

  • Nothing in the study suggests any particular cause for asynchronization in the brain
  • Both the study abstract (the study itself is not available) and the press release refer to toddlers with "autism."  As we know, "autism" can cover a huge range of severity, so it's not clear from the information presently available whether the subjects were all children with severe symptoms, mild symptoms, or any particular constellation of symptoms.
  • While it is obviously a good thing to have a definitive biological test for autism, it seems clear that "autism" is a moving target.  As of 2013, it will be defined differently, with a much greater focus on repetitive behaviors and sensory dysfunction, and no specific criteria for speech delay.  It's not clear based on this study whether the new criteria will make such "markers" less useful.
  • As you can see from the list of blogs and articles below, this is by no means the first "breakthrough" in early detection of autism; only time will tell whether and to what degree it becomes useful in ordinary circumstances.
  • While early intervention is a terrific idea, early intervention may or may not have a very positive impact on any given child.   While some children do very well indeed, others don't progress much at all - and the reasons for these differences are not clear.

More About Early Detection of Autism

Join the Autism Community Conversation on Facebook

Sleeping fMRI May Diagnose Autism Earlier originally appeared on About.com Autism on Tuesday, July 26th, 2011 at 10:53:13.

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Succeed with ADHD Telesummit

Laurie Dupar, psychiatric nurse practitioner and ADHD coach, hosts this week-long telesummit with 12 renowned ADHD experts and authors. Join in July 25-29 as these experts share their best tips and techniques to succeed with ADHD. The telesummit is free. Listen by phone or via webcast.

To learn more or to register for the event, visit succeedwithadhdtelesummit.com

Featured Speakers and Topics:

Kate Kelly
You Mean I'm Not Lazy, Stupid or Crazy?!

Lynne Kenney
Calming the Caveman To Manage the Thinker: Practical Strategies for Everyday Life

Sarah Wright & Roland Rotz
Channeling Your Inner Fidget

Carrie Greene
3 Keys to Overcoming Procrastination

Jodi Sleeper-Triplett
Empowering Youth with ADHD

Nancy Ratey
The Disorganized Mind: Taking Control of Your Time, Tasks, and Talents

Linda Roggli
Confessions of an ADDiva: Midlife in the Non-Linear Lane

David Giwerc
Permission to Proceed: Launching Your Own Success with ADHD

Ari Tuckman
Understand Your Brain, Get More Done

Michele Novotini
The 5 Secrets to Social Success

Laurie Dupar
The ADHD Awareness Book Project

Succeed with ADHD Telesummit originally appeared on About.com ADD / ADHD on Sunday, July 24th, 2011 at 21:20:57.

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Primary Spine Care Practitioners

Chiro.Org Blog: The following is an interesting and well crafted article that posits yet another fanciful way to bring chiropractic "out of the closet".   I do have some issues with a few of Dr. Murphy's recommendations, however:

New Diagnostic Code for Autistic Wandering Approved for October, 2011

A very large percentage of people with autism "wander" - meaning they simply get up and walk or run off, for no obvious reason and in no obvious direction.  This behavior is by no means limited to people with autism: the Alzheimers community may be even more vulnerable.   Wanderers often seem compelled to wander, which means that locked doors and fences aren't always enough to curb the behavior.  And, of course, caregivers can't possibly be vigilant all day and night, nor should they be asked to lock their loved ones in escape-proof settings.

The result of "wandering" can be tragic, and most of us have read stories of autistic people drowned in pools or dying of exposure.

To address this issue, the CDC has created a somewhat controversial new medical code which can be added to certain diagnoses, including autism, Alzheimers, and dementia.  According to a CDC press release:

The ICD-9-CM code for wandering Adobe PDF file, effective October 1, 2011, is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations--making this an important safety issue for individuals affected and their families and caregivers. Children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders....


This code is intended to capture information about individuals, with any condition classified in the ICD, who wander. Wandering was deleted as a subcode under the Alzheimer's and dementia code and added as a condition to be noted in association with disorders classified elsewhere [V40.31]. The intention is to provide a way to document, understand, and improve the situation for individuals who are at risk of injury or death due to dangerous wandering. Wandering should be coded if documented in the medical record by the provider (i.e., physician).

The wandering code is not linked to a specific diagnosis, nor is it part of the diagnostic codes used for autism or intellectual disabilities. The ICD-9-CM classifies behaviors and risk factors in addition to diseases and syndromes; as such, the wandering code is used in conjunction with other diagnostic and symptom or procedure codes.

More on Wandering and Autism

Join the Conversation on Facebook!

New Diagnostic Code for Autistic Wandering Approved for October, 2011 originally appeared on About.com Autism on Friday, July 22nd, 2011 at 07:45:38.

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Certified Nurse-midwives Give Chiropractic The Thumbs-Up

Chiro.Org Blog: 187 certified nurse-midwives filled our an on-line, self-administered survey designed to gather their opinions on the safety of chiropractic, and the scope of chiropractic practice. It also captured demographic information relating to their professional training and their personal and professional clinical experiences with chiropractors. The results were most revealing:

Permission to PROCEED

Permission to PROCEED: The Keys to Creating a Life of Passion, Purpose and Possibility for Adults with ADHD (2011) by David Giwerc is a wonderful read for adults with ADHD, for the loved ones supporting them and the professionals who provide ADHD coaching. Giwerc's approach is compassionate, informative, practical and solution-focused.

So often there is misunderstanding about ADHD. Giwerc explains how the invisible, paradoxical challenges of ADHD contribute to these misperceptions. He understands the cycle of negative thoughts and pessimism that a person can easily find himself (or herself) trapped in. He offers hope and help in breaking this pattern and moving forward.

Giwerc is a longtime advocate for ADHD awareness, education and understanding. He is a master certified coach and founder and president of the ADD Coach Academy, the first, largest and only comprehensive ADHD coach-training program fully accredited by the International Coach Federation.

Read more about Permission to PROCEED

Permission to PROCEED originally appeared on About.com ADD / ADHD on Wednesday, July 20th, 2011 at 21:52:26.

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Understanding Learning Differences

When a child grows up feeling less than, stupid, lazy or defective, life can feel pretty hopeless. It is our job as adults to help children understand that they are not these negative labels and that the future holds wonderful possibilities for them.

Nurturing a Child's Strengths: Lessons from Jonathan Mooney

Understanding Learning Differences originally appeared on About.com ADD / ADHD on Wednesday, July 20th, 2011 at 21:52:16.

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