“Growing up with undiagnosed Asperger’s Syndrome can be traumatic for many individuals.”
Many adults with undiagnosed Asperger’s Syndrome are usually keenly aware that they do not ‘fit in’, yet are unable to either express or understand exactly what it is that makes them feel differently to others.
For this reason many undiagnosed adults develop negative perceptions of themselves as “weird”, “crazy,” or “broken.”
Despite these negative self-images, many undiagnosed adults are able to hide their difficulties by developing coping mechanisms, such as mirroring or mimicking those around them in social settings.
They are therefore seen as being able to engage in the everyday routines of life such as working, having relationships, getting married and having children.
Yet though they have the ability to apply such coping mechanisms, many individuals with undiagnosed AS, are never able to shake off the underlying awareness of themselves as inherently ‘different’ to those around them.
Ironically, the very skill sets that adults with undiagnosed moderate to mild Asperger’s apply, in order to try and ‘fit in,’ have meant that they have flown “under the diagnostic radar”.
Other individuals with undiagnosed AS, who have not learnt such skill sets, may show greater signs of having social communication difficulties.
This can make them more susceptible to situations such as chronic unemployment and social isolation due to the fact that they may be mistakenly perceived as people who are deliberately anti-social, argumentative, objectionable or aloof loners who crave only their own company.
In reality, these people may be individuals who are displaying the lack of social skills required to communicate and act appropriately, that make up the characteristics or traits commonly described in Asperger’s Syndrome.
It is now well established that individual with AS may display varying degrees of some or all of the following characteristics:
A lack of social skills which manifest in inappropriate social approaches, responses or social awkwardness.
Difficulty recognizing the facial expressions or emotions of others.
Difficulties in considering or understanding others’ viewpoints.
Limited interest in friendships
Difficulties with being able to communicate their ideas, thoughts and emotions.
Difficulties in comprehending and following social reasoning and adhering to the status quo.
Difficulty with transitions and changes.
Hold a strong need for routines.
Narrow range of interests or idiosyncratic special interests.
Be overly sensitive to sounds, tastes, smells and sights.
Have motor coordination difficulties.
Experience difficulty managing their own negative feelings, especially anxiety, anger and depression
Adults with undiagnosed AS are susceptible to experiencing high degrees of stress, frustration, confusion and anxiety due to their awareness that they do not ]fit in’.
These additional difficulties have often been misinterpreted, misdiagnosed, misunderstood and mistreated, especially when their underlying AS is undiagnosed or not adequately understood.
Some of the most common additional difficulties include:
Angry outbursts (physical or verbal aggression, verbally threatening behavior)
Agitation and restlessness
Increase in obsessive or repetitive activities, thoughts, or speech
Low mood or depression
Apathy and inactivity
Unfortunately many professionals who are unfamiliar with AS often only focus on the surface symptoms and behaviors that an individual with undiagnosed AS may display.
This leaves individuals with undiagnosed AS at risk of being incorrectly diagnosed with conditions such as:
Personality Disorders
Psychosis
Bipolar Disorder
Obsessive Compulsive Disorder
Mood disorder
It is therefore essential, that in order to prevent individuals with undiagnosed Asperger’s Syndrome from being incorrectly diagnosed with conditions, treatment plans and medications that will not help them, that a thorough Autism assessment must be applied to adults who fall within this criteria.
A proper diagnosis of AS can better help adults put their difficulties into perspective and enable them to understand the underlying reasons for their lifelong struggles.
Correct diagnosis and effective treatment can help improve self-esteem, work performance and skills, educational attainment and social competencies.
More importantly a correct diagnosis can trigger both a journey of self-discovery and a healing process for the individuals concerned.
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- Tony Attwood – The Pattern of Abilities and Development for Girls with Asperger’s (seventhvoice.wordpress.com)
- Finding the Positives – Women with Asperger’s Syndrome at peace with being different – An Interview with the Indomitable Rose Guedes and Iris Gray -Written by Richard Watts (seventhvoice.wordpress.com)
- Living with Someone Who Suffers from Asperger’s Syndrome (peoplewithdisabilaties.wordpress.com)
- Myths, Lies and Suspicious Minds – Debunking the popular misconceptions that surround the lives of adults with Asperger’s Syndrome (seventhvoice.wordpress.com)
- Strategies for helping those with Asperger’s Syndrome/Autism deal with negative people on line. (seventhvoice.wordpress.com)
- ” I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”. (seventhvoice.wordpress.com)
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Seventh Voice 
I was undiagnosed until I was 25 and many of these things apply to me….. however I am also bipolar and have ocd on top of my aspergers
Rarely do you see anything positive about Asperger’s syndrome, instead you see a long list of weaknesses.. It’s not fair to target people on the spectrum because I’m sure there are a lot of people without AS that have to cope with these challenges. It’s sad how people with autism assume that those who aren’t on the spectrum are these gorgeous, popular, perfect people. No one is perfect, with or without AS. These lists will keep on giving people a negative impression about autism. Someone needs to make a list of the positive qualities of Autism so people can start seeing the other side of it.
I was officially diagnosed when I was 28. It still burns me up that there was virtually no knowledge of Asperger’s, never mind autism in general, when I was a kid, because school would’ve been so much easier for me. To this day, I still have trouble saying or doing the “right” things. I’m 33 years old, and I’ll tell you right now, it doesn’t get any easier.
I was diagnosed when I was 35 years. I am 39 now. I have been bullied in school. No one understood me. I got no help. I live in Sweden.
Reblogged this on Through the rainbow.
Thank you for reblogging this 🙂
In the county where I live in the UK there has been a hard push to improve the way people are diagnosed with ASD. This was not in place when we tried to get help for my daugther 2 years ago but now, if anyone, child or adult, presents with any kind of mental health problem, be it depression, anxiety, OCD and so on, it is now required that a member of the assessing team must be fully trained in recognising ASD traits and if these are identified then the person presenting is put in a waiting list for diagnosis. This of course takes many months.
I attend a monthly support group for parents of grown children with Asperger’s which is run by our local branch of the National Autistic Society. These meetings are attended by the manager of the Asperger Specialist Team for our county. It is because of this interaction between ‘us’ and ‘them’ (the Team) that much has been learnt about the horrendous struggles we as parents have in trying to get help for our adult Aspie children. Much more needs to be done however. We are not just parents and carers we are also advocates. We are there to help not to hinder! The problem in our area is the follow up after diagnosis. We still have so far to go.
Wonderfully informative post Seventh, many thanks.
Sherri it’s fantastic to see these protocols coming into play in the UK….. I hope Australia follows suit soon……. 😉
Let’s hope so. As I say, this is all very recent, certainly in our particular area, other parts, of the UK have much more in place, many more are woefully inadequate putting it mildly. I told my husband that we need to move! Still a long, uphill climb, but one step at a time. Thanks again Seventh for your beautifully written posts and for your support 🙂
Hi Sherri, which county do you live in – their approach sounds very good and could be a model for others. I live in Oxfordshire and had to travel to Swindon for the diagnosis, I presented the doctor with all the information as she knew very little about it.
Hi Julia,
I live in Somerset. At the time I sought diagnosis for my daughter 2 years ago our GP didn’t have a clue about ASD. It took a year just to get a referral. These changes have been very recent. I’m not surprised by your story. Somerset has an Asperger Specialist Team which is in Bridgewater. When my daughter received her diagnosis the follow up was woeful but since January of this year they now have an Asperger Psycologist. We fought for my daughter to see him and now she is meeting with him regularly. He is the first professional that she trusts and who she says doesn’t patronise her or make her feel that she is stupid or ‘thick’.
Bristol has one of the best intervention programmes in the UK but we live too far south in Somerset to come under this level of care unfortunately. We are seeking to change this in Somerset to bring things in line with Bristol by signing up for Push for Action which is sponsored by the NAS. This ‘push’ covers other areas I believe. The link is: http://www.autism.org.uk/get-involved/autism-strategy.aspx
I hope this is helpful. Please don’t hesitate to contact me if you would like any more information, I’ll do my best to try and help if I can!
Take care
Sherri
This is a really good piece that captures the way I felt until I received my diagnosis in 2007. With diagnosis in hand and some accommodation, I was able to complete a master’s degree program successfully, whereas I failed in an earlier graduate program where I didn’t have the diagnosis and was seen as not fitting in and disruptive.
I so agree with you. Be patient but persistent. Make sure you find professionals who thoroughly understand Aspergers and autism as it is seen in adults. There are so many professionals trained to screen children, but not nearly enough trained to understand how to screen signs and symptoms in adults.
Reblogged this on The Life of Decci.
Reblogged this on dyslexic annie's Blog.
I’m not so sure that a formal diagnosis at my age (64) would make much of a difference. Most of my life I thought of myself as not being a “real” person, though intellectually I know I am real. When I observe social interactions I think, oh, that is what real people do in that situation. I have to look up how to react to situations online so I say the right things. I find the world of people chaotic and seek the outdoors and photography for peace. I taught high school for several decades, and loved the work. At some point, however, the chaos became too much to bear. I retired early. When I was teaching I would often have Asperger students placed in my class…because I did well with them. I “got” them. At the time I never even considered that I might have Asperger’s myself. But two years ago, out of the blue, my daughter asked me if I had Asperger’s. I didn’t even have to think when I said, maybe I do. So if I do, I have learned to cope.