A Diagnosis May Not Change Anything But It Also May
So, why would you bother trying to get a diagnosis? Well for a start, it can come as a relief to have an answer. For lots of people, its helpful just to know, rather than to suspect or assume.
Some people have described having a lightbulb moment where they finally understand why they feel the way they do.
An official diagnosis can help you answer a lot questions you might have about yourself. It can also help those around you such as your family, friends or your employer, to understand the difficulties you experience, and how they can make things a little easier.
There have also been many cases where people have been misdiagnosed with a mental illness or other disability, such as social anxiety disorder or OCD. Knowing opens the door to appropriate treatments and services . Your doctor can also help you tap into autism support groups and social skill training. All of which can help make the day-to-day that bit easier.
Some people believe a diagnosis wont change anything and will be an unhelpful label, so why waste time trying to seek one out? And this is fine! Some adults with ASD are happy self-diagnosing and finding their own ways to adapt. Its up to each person to decide whether a diagnosis would be helpful or not.
Benefits Of A Diagnosis
Some people see a formal diagnosis as an unhelpful label, but for many, getting a timely and thorough assessment and diagnosis may be helpful because:;
- It may help you to understand why you may experience certain difficulties and what you can do about them.
- It may correct a previous misdiagnosis and mean that any mental health problems can be better addressed.
- It may help you to get access to appropriate services and benefits.
- You will be entitled to have reasonable adjustments made by your employer, college or university.
- It may help women, and those with a demand avoidant profile, who may not before have been recognised as autistic by others.
- You don’t need to be diagnosed to join our online community or subscribe to the Spectrum or Your Autism magazine, but you might need a diagnosis to join some social groups.;
- Although you dont need to be diagnosed to have self-belief, some autistic people welcome the diagnosis as a way of making sense of their life experiences and being able to identify with other autistic people.;
What Should I Expect
Adults that have experienced years of social conditioning and self-management have gotten good at hiding or even keeping some of the symptoms that they now want a doctor to diagnose. The observations that lead to a diagnosis for autism when youre an adult are much more nuanced than the observations needed to diagnose a child. When you do go in for your diagnosis, expect a specialist to watch your behaviors closely and ask many questions. Its also likely going to involve the doctor speaking to your family, relatives and close friends that may have observed you for much of your life, because they can give the biggest testimony as to your behaviors.
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Have An Autism Assessment
An autism assessment is where a team of autism specialists check if you or your child are autistic.
An assessment team may:
- ask about any problems you or your child are having
- watch how you or your child interact with other people
- speak to people who know you or your child well, such as family, friends, your GP or your child’s teachers
At the end of the assessment, you’ll be given a report saying if you or your child are autistic.
Autism In Adults: Being Diagnosed Late In Life Is Challenging
With the adjustments in both the DSM-5 and its predecessor, the DSM-IV, to the definition of autism, more people are also being diagnosed with this developmental condition later in life.
Typically, people who are on the autism spectrum but do not receive a diagnosis until adulthood have milder symptoms. They may feel like they do not belong; they may wonder why they struggle to maintain friendships or relationships; or they may first receive a diagnosis of a co-occurring condition like depression or anxiety, which developed because of social isolation or communication struggles with others.
Testing children for signs of autism is a much more established practice, so many adults who are on the autism spectrum end up self-diagnosing themselves. Then, they seek help from a doctor or therapist who can provide an actual diagnosis. A medical diagnosis is a vital step to getting the right type of behavior therapy to understand and manage symptoms.
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Receiving An Autism Diagnosis As An Adult
It’s not uncommon for an adult with autism to have gone through life without a diagnosis – some saying they just had a feeling they didnt quite fit in”.
We often hear stories about people reading or seeing something about autism and thinking to themselves, Thats me!.
Its actually not uncommon for people to have gone through life without a diagnosis, some saying they just had a feeling they didnt quite fit in.
Lets take a deeper look into receiving an autism diagnosis as an adult.
Many Undiagnosed Adults Were Just Thought To Be Shy
The nineties might be famous for Doc Martins, Troll dolls, and Britney Spears but it was also the era when medical professionals made some major strides relating to ASD.
What these advances meant is we were now able to identify the subtler symptoms of autism much more easily, and at an earlier age.
This means that people who were undiagnosed a few decades ago may well have been today.
Instead, many people living with ASD were thought to have just been shy or introverted. Difficulty making friends, forming intimate relationships, reading peoples faces, and finding work, were put down to being antisocial, mean, or aloof.
As a child, as well as being thought of as shy, people tell of being labelled disruptive, difficult or naughty because of their behaviour.
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What Are The Signs Of Autism In Adults
Before we can understand how autism looks different in girls than in boys, lets first dive into how autism presents itself in adults. Some common symptoms could include:
- Not understanding what others are thinking or feeling
- Having difficulty saying how you feel
- Getting anxious about heading into social situations
- Trouble making friends
- Preferring to be on your own
- Not understanding sarcasm, or taking things too literally
- Liking routine, and getting anxious when this routine changes
Evaluation Based On Observation
Parents, family members or other caregivers of children on the autism spectrum;are often the first to notice delays in the usual childhood developmental milestones such as speech, eye contact, play with other children or social interactions.
Sometimes autism goes unnoticed or undiagnosed in both children and adults, especially when symptoms are mild or when the person has other disabilities or health problems. In some cases, other medical conditions such as are present, making autism difficult to recognize. As a result, ASDs may go undetected for years and may only be diagnosed during an educational impasse or a life crisis which puts a person in contact with professionals able to recognize the disorder.
Medical professionals use the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders to evaluate autism spectrum disorder and the related social communication disorder . ASDs are diagnosed based on a combination of specific behaviours, communication delays and/or developmental disabilities.
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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.
How Medical Professionals Diagnose Adult Asd
If you start with your primary care physician, theyll review your concerns and refer you to a specialist. This specialist will then perform a thorough evaluation that includes behavior checklists, symptom self-reporting, and direct observations.
Theyll also speak with your parents, siblings, and significant other to gain a holistic picture of your lifelong behavior patterns. Once the evaluation is complete, youll meet with the specialist to review your results and explore treatment options.
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Signs Of Autism In Adults
Difficulty understanding the non-written rules of language, resistance to change, and reluctance to engage socially are signs of autism spectrum disorder. Some children and adolescents reach adulthood without facing these struggles. However, when adulthood hits, and the routine and structure of school life are gone, along with parent and teacher support, symptoms become more apparent and impactful.
Thirty to 60 percent of individuals with autism are also affected by ADHD. Symptoms of ADHD and autism often overlap and the signs of each condition may look different in adulthood than they did in childhood. For example, according to the Centers for Disease Control, hyperactivity in adults with ADHD may present itself as extreme restlessness or high activity levels that wear out friends and family.
A distinguishing factor between the two conditions is social connectivity. Adults with ADHD often exhibit inattentiveness, social anxieties, and challenges with controlling impulses. Social deficits as a whole are a defining characteristic of an adult autism diagnosis. When a person with ADHD speaks out of turn, it is probably due to lack of impulse control. With autism, talking over someone is likely due to an unawareness of the expectations of speakers and listeners, and a lack of understanding of social contexts.
Signs Or Symptoms Of Autism
If you are experiencing one or more of the following, you may want to consider asking for an assessment for autism:
- difficulties interacting or communicating with others socially
- rigid and repetitive behaviours, resistance to change or restricted interests
- problems finding or staying in a job or education
- difficulties having social relationships
- previous or current contact with mental health or learning disability services
- a history of a neurodevelopmental condition or mental disorder.
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What To Do Next After Receiving An Adult Autism Diagnosis
I have written about what to do after receiving an adult diagnosis so please consult this article for guidance. There is also the decision on who should be told about the diagnosis. Ive written an in-depth blog about that.
If you want to be in a support group, contact your local autism society to see what they offer for adults. There are also on-line support options available. Here is a list of the groups on Facebook.
If You Are Told You Are Not Autistic
Sometimes people are told they aren’t autistic, and sometimes they may be given a diagnosis they don’t agree with.;
You can seek a second opinion, which either means going back to your GP to explain that you aren’t happy with your diagnosis and ask them to refer you elsewhere, or paying for a private assessment.;
If you go for a second assessment, remember that it may reach the same conclusion as your first.;
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Common Symptoms Of Autism Spectrum Disorder
The signs and symptoms of autism spectrum disorder fall into three main categories:
- Verbal and nonverbal communication
- Social interaction
- Repetitive or ritualistic behavior
While these symptoms vary from person to person, they often become more apparent in adulthood. Children with autism have parents and teachers as their support systems, but adults with ASD may feel isolated and alone. It can be difficult to juggle the demands of adult life while handling your symptoms, which well explore below.
If youre asking yourself, what do adults with autism struggle with?, here are the main symptoms:
- Difficulty interpreting body language and facial expressions
- Deep interest in only one or two topics
- Inability to make eye contact when speaking with others
- Clumsiness and general coordination difficulties
- Trouble interpreting and accepting corrections or feedback from others
Overcoming Taboos And Stereotypes
The reality of obtaining a diagnosis for autism as an adult is that many people will not understand your choice and there are less resources available to adults. While many insurance companies will cover treatment, many will not cover the cost of a diagnosis. Furthermore, most people assume that if you have finished school and obtained gainful employment, there is no reason for a diagnosis. However, they dont really understand what kind of loneliness and dissatisfaction that not understanding yourself can bring. Dont be afraid to seek whats right for you.
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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.
If You Are Diagnosed With An Autism Spectrum Condition
If appropriate, you will be referred to our Adult Social Care Team for assessment.
We may offer you follow-up advice and information if you have just been diagnosed. This is provided by a specialist information officer who can discuss ASC and what it might mean for you. They will be able to advise on support available and tell you about other organisations who can help you.
You may also have access to short term help, skills training and support services. The assessor will also provide information on support such as Live it Well Kent.
If you have other mental health problems you may be referred for other support such as therapy and counselling.
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Emotional And Behavioral Difficulties
- You have trouble regulating your emotions and your responses to them.
- Changes in routines and expectations cause outbursts or meltdowns.
- When something unexpected happens, you respond with an emotional meltdown.
- You get upset when your things are moved or rearranged.
- You have rigid routines, schedules, and daily patterns that must be maintained no matter what.
- You have repetitive behaviors and rituals.
- You make noises in places where quiet is expected.
Ners Of Autistic People
Some autistic people will successfully maintain relationships. However, like most relationships, there are challenges.;
An adults diagnosis of autism often follows their childs diagnosis of autism or that of another relative. This double whammy can be extremely distressing to the partner who has to cope simultaneously with both diagnoses. Counselling, or joining a support group where they can talk with other people who face the same challenges, can be helpful.
An autistic partner, like any partner, will have strengths and weaknesses when it comes to relationships. A non-autistic partner may find that there are communication breakdowns, such as misunderstandings or finding that your partner is not able to predict your feelings. An autistic partner may need routine, order and time to pursue their hobbies.;
Relationship counselling with a counsellor or psychologist experienced at working with autistic people can assist couples to develop strategies and to communicate more effectively with each other.;
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Gaining The Understanding Of Others
Many people suffer the consequences of being constantly misunderstood. Often the fact that someone has Asperger’s syndrome can lead to teasing, bullying and social isolation. When the people close to you are able to understand that there is a reason for your difficulties it is much easier for them to empathize with your position.
How Is Autism In Adults Treated
Adults arent generally given the same treatments as children with ASD. Sometimes adults with ASD may be treated with cognitive, verbal, and applied behavioral therapy. More often, youll need to seek out specific treatments based on the challenges youre experiencing .
Some possibilities include:
- seeing a psychiatrist experienced in autism treatment for medical evaluation
- consulting a social worker or psychologist for group and individual therapy
- getting counseling on an ongoing basis
- getting vocational rehabilitation
- taking prescription medication for symptoms like anxiety, depression, and behavioral issues that may occur alongside ASD
Many adults with autism have found support through online groups and forums, as well as by connecting in person with other adults on the autism spectrum.
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Why Does A Diagnosis Matter
For adults with undiagnosed autism, finding the answer may seem unimportant. After all, they have lived so long with the disorder that getting help may seem superfluous. But for some adults, getting a diagnosis is truly life-altering.;
A man told the National Autistic Society in Europe that with his diagnosis, “Suddenly everything made sense.” He could understand why some things bothered him when they didn’t seem to distress anyone else. He realized why he often felt all alone, even when he was in the company of people he loved.;
A woman told the Centers for Disease Control and Prevention that her diagnosis was the “greatest gift I have ever received.” She had a successful career, but she struggled with social interactions. Her diagnosis made the root of those problems easier to see.;
Adults with autism often know that the way they experience the world is somehow unique or unusual. They may also know that they struggle with things others tackle with ease. The diagnosis helps put these issues in context. That allows for more self-awareness and ease.;
A diagnosis can also come with tangible benefits, such as:
A diagnosis won’t change who you are. You won’t lose your autonomy. You are in charge, and you can share your news or keep it to yourself. The choice is yours. But the information could give you the power you need to guide the rest of your life.;