People With Milder Forms Of Autism Struggle As Adults
by Deborah Rudacille;/;8 September 2011
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Blurred boundaries:
Contrary to popular assumption, people diagnosed with so-called mild forms of autism dont fare any better in life than those with severe forms of the disorder. Thats the conclusion of a new study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.
In fact, people diagnosed with pervasive developmental disorder-not otherwise specified are no more likely to marry or have a job than those with more disabling forms of autism, according to a Norwegian study published online in June in the Journal of Autism and Developmental Disorders1.
Early intervention has the potential to alter this trajectory, say experts. But until todays children with autism reach maturity, it will be hard to say how much behavioral intervention at a young age can alter the course of their lives.
The implication of our findings is that the consequences of having an autism spectrum disorder with profound difficulties in communication skills and social impairment cant be compensated for by either high intellectual level or normal language function, says lead investigator Anne Myhre, associate professor of mental health and addiction at the University of Oslo in Norway.
Diagnosed As An Adult
For some adults who are diagnosed later in life, it is likely they have already found ways to cope and be resilient in the face of discrimination and stereotyping.
But this is not always the case. Some adults with autism still face daily and lifelong battles to cope in their day-to-day lives. They may also find things like getting a job, meeting new people and having personal relationships really difficult.
The NHS website highlights that it might be a positive step to be diagnosed with autism as an adult presumably because you may receive support, care and benefits. To what extent a person will actually receive this additional help is another issue. And given the increasing rates with which children and young people are being diagnosed with autism, it is likely that adults who are diagnosed later on, are going to struggle to access the support they really need.
What Are The Common Autism Types In Adults
Social interaction can often cause a great deal of anxiety. One of the most common manifestations of autism is the rejection of social situations. Unusual situations for adults can be frightening and panic frequently happens. Anger is another mood that can be shown and this behavior can become quite uncontrollable. Adults with severe autism can be completely incapable of looking after themselves. This may mean that eating, bathing, and other hygiene issues must be managed by a caregiver. Even though they are very stressful, these types of dense autism are usually not the norm.
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‘i Couldn’t Move On With Life’
In Robert’s case it took 18 months “of to-ing and fro-ing, anxious phone calls and plenty of disappointments”.
He finally went for a private assessment, which cost ã1,900. “I just wanted it all done. I felt I couldn’t move on with my life.”
He remembers the day clearly – and answered questions for six hours.
“Many of them had me searching for long-forgotten childhood memories – what textures did I like touching? Did I walk downstairs in a funny way?”
The result was a diagnosis of autism spectrum disorder.
“It was nothing more specific than that – there is too much confusion about definitions, so many specialists now tend to refrain from using any,” he says.
But the diagnosis of autism spectrum disorder later in life can be an overwhelmingly positive experience, research from Anglia Ruskin University suggests.
Dr Steven Stagg, who interviewed nine people over the age of 50, found it “allowed them to let go of impossible struggles and reframe their self-identity”.
For one person it was “a sort of eureka moment – I realised it wasn’t my fault”. For another it was “the relief of knowing what’s wrong, or what has been wrong”.
But there are often huge regrets too.
For Barney, who was interviewed for the study in Health Psychology and Behavioural Medicine, there is the realisation that those closest to him have suffered too.
“If I think back I can’t believe I was a teacher – not a very confident one, not able to communicate with people.”
Finally ‘a Better Life’
Eventually, Barbara Moran was recognized by her health care providers at The Menninger Clinic as a high-functioning individual and was allowed to attend public school. Later, she was placed in foster homes with families hired by Menningers. Today, she lives on her own. She has spoken at autism conferences, and her artwork has been exhibited in several shows.
At Menningers, I was in the best place as far as institutions are concerned, but mental patients are not listened to. They are told what is best for them, Moran says. Today, autistic people can have a better life if they get the kind of help they need.
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Can Autism Be Diagnosed In Adults
Adults may have a variety of autism spectrum diseases. Autism spectrum is an umbrella term used to describe common developmental disorders. Because autism affects the function of the brain, it creates difficulties in communication problems and social interaction. Autism is typically seen in the first three years of life and affects boys four times more than girls. Autistic people often have three difficulties in the field: social interaction, communication and interests. They are having difficulty in establishing relationships with others and are isolating themselves with group dissatisfaction.But, can autism be diagnosed in adults?
Finding Someone Qualified To Evaluate Adults With Asd
Currently, there are relatively few clinicians who specialize in evaluating and treating adults with autism. Nor do we have established criteria to objectively judge such qualifications.;
In my opinion, your best bet may be a developmental pediatrician, child psychiatrist or pediatric neurologist who is both experienced in evaluating autism in children and open to seeing older patients. So I would recommend talking to the clinician who diagnosed your child. If she or he does not feel qualified to evaluate an adult, he or she may have a respected colleague who would be.
Otherwise I would recommend contacting an established and respected autism center in your area. Examples include the centers in the Autism Speaks Autism Treatment Network.;This will provide you with the assurance that the clinician has agreed to adhere to the centers high standards for care for patients with autism, regardless of age.
Thanks again for your question. I hope this information helps and that youll let us know how youre doing.
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Autism And Understanding The Emotions Of Other People
An autistic person may find it hard to understand the emotions of other people.;Emotions are interpreted by subtle messages sent by facial expression, eye contact and body language. These are often missed or misinterpreted by an autistic person. Because of this, autistic people might be mistakenly perceived as being rude or unfeeling.;Autistic people may find it difficult to understand how others perceive their behaviour.
Getting An Autism Diagnosis For Adults
The most interesting people youll find are ones that dont fit into your average cardboard box. Theyll make what they need, theyll make their own boxes.
Dr Temple Grandin, Autism Advocate
So you want to be assessed for autism?
There are a number of ways that you may have arrived at this decision. It may be that your child has been diagnosed with autism and you recognise a few behavioural similarities. Perhaps your significant other or a close friend has suggested that you are on the spectrum? Or perhaps youve had the feeling of being different and have long suspected you might be on the spectrum?
Whatever the reason, the following page will help you to prepare for an assessment, and give you more information about what to expect.
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Study Highlights Experiences Of Adults Diagnosed With Autism
New research led by psychologists at Edge Hill University has placed a spotlight on the quality of life and mental health issues experienced by adults diagnosed with autism.
Dr. Liam Cross and Dr. Gray Atherton have worked with partners on a new study that explores the link between the age that an autistic adult is diagnosed and the impact it has on their life.
According to experts, a significant proportion of autistic adults today were not diagnosed until later in life, a group often referred to as the lost generation.
Work With A Professional
Several websites offer self-diagnosis tests or quizzes for autism, but these are not definitive or even approved by medical practitioners who understand autism spectrum disorder. Reading information about autism, and the experiences of people who were diagnosed as adults, can be more helpful. This information can guide you into a discussion with your doctor, so you can get therapeutic support.
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Turning 22 With Autism
The relative lack of information for and about adults on the spectrum means that a lot of parents suddenly find themselves scrambling when their childnow a young adultreaches the magical age of 22.
That’s because, on their 22nd birthday, people with autism suddenly lose their entitlement to services under the Individuals with Disabilities Education Act and enter the much chancier world of adult services.
While the IDEA actually requires schools to offer “free and appropriate education” to all children, there is no such requirement for adults. As a result, funding and programming for adults may or may not be available at any given time.
What Is Asperger’s Syndrome
Asperger’s syndrome is a diagnosis that was once given to those who had trouble with social interactions. People diagnosed with Asperger’s also had obsessive interests and enjoyed repetitive activities.;
Since 2013, people who were once considered to have Asperger’s have been diagnosed with autism spectrum disorder. Doctors now understand behaviors that were once believed to be associated with Asperger’s as caused by mild autism.
Many people have been diagnosed with Aspergers or autism in childhood. However, some people with mild symptoms do not receive a diagnosis of autism until adulthood.
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Autism Features May Be More Severe In Old Age
If you mention autism to most people, they will think about children, but it is a lifelong diagnosis. Children with autism grow up to be adults with autism. Little is known about how the conditions features change with age. This is because autism is a relatively new condition, first described in 1943 and not regularly identified until the 1970s. It is only now that those people first diagnosed are reaching older age that we can start to learn whether the condition changes over a lifetime.
There have been some suggestions that autism features may reduce as people get older. These reports, describing fewer difficulties with older age, are often from people with autism themselves and from their families. But how much evidence is there for this? Our latest research provides some answers, and also raises some new questions.
Working with the Autism Diagnostic Research Centre in Southampton, United Kingdom, we assessed 146 adults who were referred to the center seeking a diagnosis of autism between 2008 and 2015, and who consented to take part in the research. People were between 18 and 74 years old. A hundred of these adults were diagnosed with autism, and 46 people did not receive a diagnosis. This gave us an opportunity to explore the subtle differences between people who receive a diagnosis and those who dont, even though they may have some other similar difficulties.
Varied Availability Of Services
Adults with autism are entitled to nothing but are likely to receive at least some level of support. If you live in some states, you’ll have little trouble accessing services and funding for adults with autism.
If you live in other states, you’re out of luck. According to Centers for Medicare & Medicaid Services , thes states offer the least generous programs and services:
- Idaho
- Colorado
- Vermont
Of course, the definition of “services and funding” varies depending upon need. For example, Medicaid doesn’t provide vocational training or supportservices that would be particularly useful to higher functioning adults.
Medicaid may or may not be a source of funding for housing, day programs, and other services.
One excellent, updated source of information about state-by-state offerings is Easter Seals. While they do focus quite a bit on children, they also include a wide range of detailed information about resources and services for all ages.
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How Adults Discover They May Be On The Autism Spectrum
A recent CDC study reported that 2.2% of American adults are on the autism spectrum. This information was based on projections of how many children had been diagnosed with autism or a related condition that the DSM-5 now considers autism.
There may be more adults with autism who are diagnosed much later in life. However, there are few screening tools that are designed specifically for adults, so many medical professionals rely on talking about childhood experiences or on information their client gathered while self-diagnosing, which the medical professional can expand on.
If you are an adult with autism, you might have:
- Been diagnosed with a mental or behavioral health disorder, or an intellectual disability, as a child but now understand those symptoms as closer to autism.
- Felt socially isolated, different, or alone without understanding how to solve the problem.
- Read about autism and recognized symptoms in yourself or feel acutely that your experience is being described.
- A child in your family who has been diagnosed with autism, and you recognize the symptoms in yourself based on their diagnosis.
While you may suspect you have autism, you cant officially diagnose yourself. You need a doctor to assess you and make an official diagnosis.
How The Development Of Autism Works
If it is not possible for a teenager or an adult to develop autism, how does autism actually develop? A 2014 report in the New England Journal of Medicine suggests that brain changes that take place long before birth might be what causes the symptoms of autism spectrum disorder.
Looking at the brains of children with autism and those without, scientists discovered abnormalities in the brain regions that control language, social, and emotional control in 90% of the children with autism. And the abnormalities themselves were formed as the result of a process occurring long before birth.;
In terms of timing, these changes occur in the cortex around the second trimester of pregnancy. Speaking to NPR, one of the authors of the study explained that something must have gone wrong at or before the second trimester.;
Commenting on the study, the director of the National Autistic Society Centre for Autism in the United Kingdom stressed the importance of early detection. This is primarily because the earlier the intervention, the easier it will be for patients, parents, and therapists to compensate for the problematic developments in the brain.
Secondarily, it is for fear that undetected cases of autism will lead to more misconceptions that the disability develops as some people age. This misconception will affect how these people are treated.;
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Where To Get An Assessment
There are a number of government-funded services that specialise in the assessment and diagnosis of autism. You can contact these teams directly, but you may need a referral from your GP.
There are also private practitioners and organisations that conduct assessments on a fee-paying basis. These services can be accessed via a referral from a health care professional, or you may be able to refer yourself directly.
Quick tip:It is important that you are assessed by a qualified professional with a comprehensive understanding of autism across ages and genders, and practical experience with the assessment and diagnosis process.
To learn more about professionals experienced in the assessment and diagnosis of autism, go to our Support and services section.
How Do Professionals Make An Autism Assessment
Assessment tools often use a series of questions, in-person observations and interactions to support a professional diagnosis of autism.
Depending on your needs, health professionals will gather information around your medical and health history as well as the following:
- Developmental and educational history: You will be asked about your development as a child and teenager. This may cover a wide range of developmental areas.
- Autism-specific signs and/or symptoms: You will be asked about behaviours relating to social communication and interaction and restricted, repetitive patterns of behaviour.
- Other relevant behaviours, signs and/or symptoms: You will be asked about the presence of any co-occurring condition and/or differential diagnosis.
Quick tip: Sometimes, it may be helpful to invite someone who knew you as a child to your appointment perhaps an older sibling, childhood friend or a parent. They may be able to offer important information about your early childhood that you dont remember. However, this is entirely up to you.
Quick tip:You know yourself best. If your GP or other health professional doesnt feel you warrant further assessment but you feel you do get a second opinion.
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Autism Symptoms In Adults At Work
Symptoms of ASD vary greatly from person to person based on the severity of the condition. These or similar manifestations of ASD may be apparent at work:
- When youre having a conversation with your boss, you prefer to look at the wall, her shoes, or anywhere but directly into her eyes.
- Your co-workers say that you speak like a robot.
- Each item on your desk has a special place, and you dont like when the cleaning company rearranges it to dust.
- You are really good at math, or software coding, but struggle to succeed in other areas.
- You talk to your co-workers the same way you talk with your family and friends.
- During meetings, you find yourself making involuntary noises, like clearing your throat over and over.
- When talking with your boss, you have difficulty telling if he is happy with your performance or mad at you.
In addition, individuals with ASD may exhibit extraordinary talents in visual skills, music, math, and art. And roughly 40 percent of individuals with ASD have average or above-average intelligence.
If you experience these or similar symptoms of ASD, consult a doctor or mental-health professional for a formal autism evaluation and learn more about treatment options for autism symptoms in adults.