Diagnosing Adults Is Challenging
Early testing should catch most people with ASD. When done properly, people with autism know about it when they’re young. They use therapy to help them learn how to succeed with autism.
But some adults have never gotten the help they need. They may have grown up wondering if they have the condition and what to do about it.
Diagnosing an adult isn’t easy, says Autism Speaks. Challenges include:
- Missing viewpoints. Parents may be absent or distant in adulthood, and they can’t fill out questionnaires or speak to a person’s habits and routines. Teachers or supervisors may be adequate substitutes in some cases, but not all.
- Hidden habits. Adults with ASD are adept at concealing issues. Theyve spent their lives correcting or covering these problems. It can be tough to see the underlying issues.
- Poor checklists. Most diagnostic tools were made for children, not adults. Researchers are working on this issue.
A doctor’s visit often starts the ASD conversation. Adults explain their thought patterns, challenges, and behavior. Doctors make observations. Then, doctors order tests to rule out other conditions, such as hearing loss or Tourette’s syndrome.
To meet diagnostic requirements for ASD, adults must have:
- Persistent social deficits, including few social interactions.
- Repeated, restricted behavior patterns, interests, or activities.
- Problems that started in childhood and persist into adulthood.
- Issues that limit and impair daily functioning.
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.
Later Signs Of Autism
When possible early monitoring, screening, evaluation, and diagnosis of autism can help children get therapy and other treatment help they may need. However, sometimes signs do take longer to show up.
Once children get older, some signs of autism may be difficult creating and maintaining friendships. Additionally, older children may have a hard time communicating with adults and other children their age.
In school, some children with autism may have a harder time following rules and understanding expected behaviors. In addition, various mental health disorders and conditions may also bring awareness that a child may have autism, such as:
- Attention-deficit disorder
- Behaving
- Mobility
People in a childs life, such as parents, grandparents, childcare providers, and other caregivers for the child, can help in assessments for developmental monitoring. For example, if you or someone notices that a child is not meeting milestones, you can talk to your pediatrician or doctor about your concerns.
During wellness visits, your pediatricians office may also ask questions in regards to developmental monitoring. For example, if a child is missing milestones, this may be a sign of a problem, and your pediatrician may recommend your child sees someone for developmental screening.
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Where Can We Get A Diagnosis
Services vary from state to state and from city to rural locations. In the first instance itâs best to talk to your primary health care provider, usually your GP, who will be familiar with whatâs available in your local area.
There are several state government-funded services that specialise in the assessment and diagnosis of autism.
These have the advantage of being free but are often in high demand, with waiting lists stretching to several months. Many services now need a referral letter from a paediatrician, although some may accept referrals directly from your GP.
St Giles Developmental Assessment Team â fully funded multidisciplinary assessment services for preschool-aged children only.
There are also private health professionals and teams who conduct assessments on a fee-paying basis. If you can afford this option, this is usually the fastest way to get a diagnosis.
For children aged 13 years or under, Medicare rebates are available to help cover at least some of the cost. These Medicare items cover:
- assessment and diagnosis by a paediatrician or child and adolescent psychiatrist
- up to 4 allied health professional assessments to assist with the diagnosis.
If you have private health insurance âextrasâ cover itâs worth checking if this can help cover the cost of autism assessments too.
*but could also be a nurse, allied health professional or an Aboriginal health worker.
Assessment For Autism Diagnosis
A formal diagnosis is done by a psychologist, psychiatrist, or neuropsychologist who does adult ASD assessments. A good place to start to find such a person is through your local autism society or by contacting the governing body for that profession. Most have a college or association and they may be able to provide you with some names of people in your area. You can also ask around, maybe through members of a support group. How did they get their diagnosis who did it? If there is a local university or medical teaching hospital, there may be a psychology department you can be referred to.
If a formal assessment is too expensive, contact the local autism society or services organization to see if they have someone on staff or a consulting psychologist. Some universities, hospitals or clinical centers offer assessments by supervised graduate students who need practical experience in diagnosing. If you are in on-going therapy for other issues, a therapist may suggest the possibility of ASD and be willing to give a diagnosis.
Keep in mind that there is no standardized screening tool tailored to adults that is universally endorsed. Some of the autism tests specifically designed for adults are: ADOS 2 Module 4, ADI-R, 3Di Adult, OCI-R, AFQ, SRS 2, RAADS-14, AdAS Spectrum.
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My Child Has Not Been Diagnosed With Autism What Should I Do Now
You might feel relieved after having gone through the assessment process that your child has not been diagnosed as having autism, but at the same time this might be accompanied by some confusion and frustration as to what you should do next.
The report you receive from our Diagnostic Team will explain the reasons for the outcome of your childs assessment. They might also be able to provide you with additional information about other types of assessment that may be helpful, or make suggestions as to other supports and services you may be able to access.
Barriers To Official Diagnosis
A generation or two ago, many people had their autism go unnoticed, especially if their symptoms were relatively mild. Even as recently as 2000, just 1 in 150 children were diagnosed with autism, compared to 1 in 59 in 2014. This apparent increase in the autism rate is likely due to better early diagnosis and detection. The shift toward greater awareness of autism means that people who did not get diagnosed in childhood may pursue diagnosis as adults.
Even as early diagnosis becomes more prevalent, some groups are less likely to be diagnosed as children:
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What An Autism Diagnosis Means For Older Children And Teenagers
You might wonder whether getting and having an autism diagnosis in later childhood or adolescence will make a difference to your child.
The diagnosis itself wont change your child, or the way that you think or feel about your child. But it might help you and your child understand your childs strengths and difficulties.
A diagnosis describes your childs strengths, abilities, difficulties and needs. And it can help to guide therapies and support for your child and help with getting services and funding to support your childs development for example, extra help at school.
Do I Need An Autism Diagnosis
Some adults may question whether they need a diagnosis later in life. Some people self-identify as autistic without receiving an official diagnosis. Its a personal decision. What can be helpful in receiving the label is access to supports and services that may not be available without a diagnosis, i.e. an income support program that provides additional income if mental health issues prevent being able to work full time. Maybe you need a job coach, a support person to look in on you a couple of times a week, specialized mental health services, or supports in the workplace. A diagnosis can also provide peace of mind and validation that indeed, you do have ASD.
Self-diagnosis in the adult autism community is widely accepted. You can join a support group or get together with other ASD adults without a formal diagnosis. Pursuing a diagnosis can be expensive as most health plans wont cover the cost and it can be difficult to find a professional who is adept at providing an adult diagnosis.
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What Other Conditions Co
The current diagnostic manual for autism, the DSM-5 notes that 70% of the time a diagnosis of autism is accompanied by an additional condition or diagnosis, and 40% of the time by two or more additional conditions of diagnosis.
These co-occurring conditions can appear at any time during a persons development, and some may not appear until later in adolescence or even adulthood.
Here is a list of key conditions that can occur in addition to a diagnosis of autism.
How Do I Find A Diagnosis
Unfortunately, at the moment in Ireland, there are no public assessment teams dedicated to adult diagnoses. Currently, the vast majority of adults who think they might be autistic can only get an assessment privately.
Most private psychologists in Ireland do not require a GP referral to access a psychological assessment for autism. You can self-refer by contacting them directly. It is very important that you undertake an assessment with a professional that is familiar with autism in adults and works in a respectful, neurodiversity affirmative way .
It also may be advisable to talk to your GP. There are many private psychiatrists who do require a GP referral. While your GP may only refer you to a private psychologist or psychiatrist, it is important that your GP understands you, and also is able to see the demand for these assessments in Ireland and advocate for them appropriately. You will need to provide your GP with a very specific list of the reason why you think you might be autistic as they may still hold outdated ideas about autism .
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Autism Diagnosis For Adults And Children
The Diagnostic Team carries out autism assessments at Autism SA once the appropriate referral process has been completed. The team consists of psychologists and speech pathologists with a collective 75 years of experience in Autism Spectrum Disorder diagnosis.
There is no biological test for autism. Instead, autism is diagnosed through observation and interaction with an individual, in conjunction with background information relating to development, health and behaviours.
No two individuals experience of autism is the same. This means that the specific requirements of the autism diagnostic process can vary depending on the need. Similarly, the assessment process is different for children and adults.
Early Signs Of Autism
Autism signs may vary between children. However, there are some early signs to look for when it comes to autism.
One early sign of autism can be limiting and avoiding eye contact with others. Children may not play or interact with other children, parents, or other caretakers.
Children with autism may also have a harder time with language and may not have as many words as other children their age. Additionally, they may have a harder time communicating by using words.
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Diagnostic Criteria For Aspergers Syndrome
Heres a brief summary of the from the previous version of the DSM :
- having difficulty with verbal or nonverbal communication, such as eye contact or sarcasm
- having few or no long-term social relationships with peers
- lack of interest in taking part in activities or interests with others
- showing little to no response to social or emotional experiences
- having a sustained interest in a single special topic or very few topics
- strict adherence to routine or ritual behaviors
- repetitive behaviors or movements
- intense interest in specific aspects of objects
- experiencing difficulty in maintaining relationships, jobs, or other aspects of daily life because of these previously listed signs
- not having any delay in language learning or cognitive development typical of other, similar neurodevelopmental conditions
As of 2013, Aspergers is now considered part of the autism spectrum and is no longer diagnosed as a separate condition.
Finding Autism Services For Adults
Autistic adults often struggle to find services, since many advocacy organizations and public health agencies focus on children. The right doctor or therapist may be able to offer a referral to local organizations. The Autistic Self Advocacy Network offers a rich variety of resources, including tips on advocating for oneself and talking about autism with others. The Asperger/Autism Network has compiled a list of resources specifically for adults.
Autistic adults should know that discrimination against people with autism is a form of disability discrimination. The Americans With Disabilities Act prohibits employers from making hiring or firing decisions based on disability status. It also requires that, in most cases, employers offer reasonable accommodations to people with disabilities, including those with autism. In some cases, a lawyer may be a valuable resource who can help with identifying specific rights and accommodations to which a person may be entitled.
Therapy can help autistic adults in many ways. Therapists who specialize in autism can connect autistic people to additional services, offer coping strategies, and educate adults about life on the spectrum. A therapist can also help autistic adults talk to others about their diagnosis and manage relationship challenges. In addition, therapy can help a person cope with the social or economic barriers that may have delayed their diagnosis.
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Articles On Autism Diagnosis
Autism spectrum disorder is usually diagnosed in young children. But what if you think you may be on the spectrum, and it never got diagnosed?
Parents of very young children are on the lookout for classic symptoms like lack of eye contact, repetitive movements, and sensory issues. And all kids are screened for these signs at their 18- and 24-month pediatrician well-child visits, so most cases of autism spectrum disorder are diagnosed by age 2.
That wasnât always the case. Not too long ago, some kids who would be diagnosed with autism spectrum disorder today might have been labeled as âdifficultâ or âlearning disabled,â and may not have gotten the help they needed.
Now, those children are adults and they or their family members may wonder if they might have ASD.
Diagnosis Of Autism In Adults
There are currently no standard diagnostic criteria for adults with suspected ASD, but they are in development.
In the meantime, clinicians primarily diagnose adults with ASD through a series of in-person observations and interactions. They also take into consideration any symptoms the person reports experiencing.
If youre interested in being evaluated for ASD, begin with your family doctor, who will evaluate you to be certain that there isnt an underlying physical illness accounting for your behaviors. Your doctor may then refer you to a psychiatrist or psychologist for in-depth assessment.
The clinician will want to talk with you about any issues you have regarding communication, emotions, behavioral patterns, range of interests, and more. Youll answer questions about your childhood, and your clinician might request to speak with your parents or other older family members to gain their perspectives about your lifelong behavior patterns.
If the diagnostic criteria for children are being used for reference, your clinician can ask your parent questions from that list, relying on their memories of you as a child for further information.
If your clinician determines that you didnt display symptoms of ASD in childhood, but instead began experiencing symptoms as a teen or adult, you may be evaluated for other possible mental health or affective disorders.
Because most autism diagnoses are made in children, it could be a challenge to find a provider who will diagnose adults.
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Getting A Diagnosis Adults > 18 Years
The assessment process for adults might look a bit different than that for children. Generally, referrals for adult diagnosis are made by the adults themselves, by their parent/carer with their consent, or by their partner.
Discussing your development with a GP or relevant professional can be also useful prior to referral, as your health care professional may make referrals to undertake a psychological or psychiatric assessment. A speech therapist could also be consulted to assess your social communication skills.
Getting An Autism Diagnosis As An Adult
Although most autism literature focuses on children, autism is a lifelong spectrum condition that affects about 1% of adults. People who are diagnosed with autism in adulthood may have a range of reactions. Some may feel confused about their identity, while others might feel peace of mind now that they have an explanation for their unique cognition. No single reaction is right, and many people bounce from one emotion to another following a diagnosis.
Autistic adults who did not receive supportive services in childhood may have struggled in school or with relationships. While finding support can be difficult, a wide range of organizations offer help to autistic adults. Many organizations focus on helping autistic adults see their diagnosis as a unique way of thinkingnot a disease or syndrome.
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Getting A Diagnosis Children < 18 Years
If you have concerns about your childs development, its important to raise them with a qualified professional, including a General Practitioner who may refer your child for an autism assessment.
Alternatively, if you have concerns about your childs development, and think that they may have autism, you can refer them directly to a number of professionals that can assess for autism.