Adult Autism Assessment in Females
Autism spectrum conditions, including Asperger’s syndrome, are challenging to identify in adults. Without appropriate assessment, many individuals may go undiagnosed, without appropriate support and treatment.
Many girls and women are going undiagnosed or misdiagnosed because the majority of the research has been conducted on males and there is a great need of research based on females compared to NT females, research based assessment tools for females and interventions for females. There is also a great need for these tools to be made readily accessible to professionals, in other countries and other languages. At present, there are few professionals in the world both trained and experienced in assessing and/or working with females on the Spectrum, across the lifespan. At this point in my career, I have worked with hundreds, closer to 1,000 females, from ages 18 months to 78 years of age, of various sub-types, symptomatology, mild to severe traits, a variety of levels of Giftedness, many professional performers (singers, musicians, comedians, actors, models), professionals athletes, professional artists, professional authors, high-profile individuals, all at different points on the Social Spectrum, some with gender dysphoria, some with sexual fluidity, parenting and being a mother, being in trouble with the law, stalking and obsessiveness, working in the sex trade, being sectioned into a mental health facility (and the experiences that go with that), have work-related challenges, and much more.
Females with Autism or Aspergers may be picked up for Autism in the teenage years with depression, anxiety or an eating disorder, if they are at all. Many females exist who are undiagnosed or misdiagnosed and continuing to have mental health problems because of this. Some are diagnosed with Borderline Personality Disorder, which may or may not be appropriate, although many have BPD traits, and I have worked with individuals who have both. For adults, no-one knew of Asperger Syndrome or Autism back in their childhood. So a comprehensive early childhood and teenage autobiographical account is an extremely important piece of an assessment. In addition, other perspectives from people who know the person very well are important. A comprehensive assessment of an adult can include a variety of assessment tools, depending on the person. It also involves childhood photographs, report cards and comments, parental and/or partner perspectives, formal assessment tool(s) and an exploration of abilities, talents and/or gifts.
The vast majority of women I work with are on the bright end of the Spectrum, and tell me their reasons for seeking a diagnosis range from self-understanding and awareness to improving their relationships, to improving their works relationships, to treating their anxiety and or depressive episodes. are not seeking services, support, nor government support pension or services. They are wanting to know why they have “felt different” for so long, wanting to know what career is best for them, wanting to know how to structure their lives. They don’t want o be on government disability not do they see they value in that. They like working, want to work and contribute.
Presently there are ZERO adult assessment tools for females, very little research that is based on females and no specific research based interventions for females. This is a crisis for females. It is challenging for females to find a professional or organization familiar with the female autism research, how to assess females and then how to support them.
When I conduct impressions assessments, the assessment of adults explore the areas of social communication and interaction, repetitive and stereotypical behaviour, sensory issues and abilities or gifts. Feedback is provided, recommendations, highly recommended resources and a “What Next?” discussion is also involved.
Generally speaking, my comprehensive adult diagnostic impressions assessments include the following:
An autobiographical account from earliest memories until approximately age 25 (usually 4-6 pages)
A written or typed account of why you feel you might have female Autism/Asperger Syndrome
A 10-page Life History Questionnaire to go over various traits, and also collect extensive life/educational/employment/psychological history, developmental information.
Where possible, I interview family members, a partner, or any other family member or friend who know the person very well. I also base my diagnosis on my direct experience of how the person presents during the interviews. Non-verbal body language, facial expressions, the sound of the voice and intonations are all assessed.
An interview exploring present day context and day to day functioning
An exploration of the following is important:
Family history, including one’s own children (if any), who may be displaying traits or be formally diagnosed.
History of mental health issues, previous medical, psychiatric, psychological and psycho-educational history (previous IQ test and/or educational assessments), previous diagnoses and/or learning disabilities
Reading of previous reports, letters, hospital admission notes, medical, educational reports
Social communication and relationship/friendship history, use of social compensatory strategies
Identity or persona (s)
A thorough exploration of compensatory strategies
A sensory processing assessment
School report cards, school/teacher comments
Childhood photos from each developmental stage
Abilities, gifts, strengths, talents and/or skills (some examples include samples of poetry, art, blog, short stories, books, singing and/or musical ability, acting, comedy routine, degrees and/or thesis/dissertation work, samples of jewellery, clothing or costumes, website, awards and so on)
Over-excitabilities, sensory sensitivities, self-soothing or stimming behaviors, sensory processing disorder and/or synaethesia
An exploration of visual, auditory, taste, touch, smell, balance, movement and intuitive differences, synaethesia and hyper empathy.
1-3 other perspectives from other persons who know the person really well
An exploration of personal journal entries, autobiographical and/or blog entries
Results of specific adult Autism assessment tools and other tools, completed by the person and also dependent on the person being assessed and the context
Other conditions (for example, Central Auditory Processing, Irlen Syndrome, Ehlers Danlos Syndrome, Hypermobility type Syndrome, food allergies)
Formal diagnostic tool(s) depend on the context of client. Research has shown that both the DSM5 and the ADOS are not very good at picking up the subtle characteristics of females on the Spectrum.
It is imperative that professionals learn to ASK females the right questions. These questions will vary from questions that would be asked of males. This is because we research is finally beginning to catch up with clinical experience, telling is what we as clinicians have know for years, that males and females present differently, in quite a few ways. Giftedness also impacts on the presentation of a female on the Spectrum, so professionals need to be aware of all levels of Giftedness and how they affect the assessment process.
So, when someone receives a diagnosis, what then?
A positive assessment or diagnosis is just the beginning.It is never to late to receive a diagnosis and the benefits outweigh any disadvantages.
While my diagnosis is based on the current DSM-5 Criteria, it is by no means a cut and dry process. The DSM is a working document and as such, does not accomodate well to females on the Spectrum.
Diagnosis, ultimately from my perspective, is best done when in collaboration with the client (and their partner or spouse when relevant) as a way to inform, educate, reflect and empower.
An important “What Next” section is very important, and may or may not involve the following, again dependent on the person, their situation and context of their life. Discussions of the following may include:
Self awareness and understanding
Education and highly recommended resources (including the best academic books, websites, research, researchers, webinars, etc)
Recommended helpful therapy
The Social Spectrum
Referral to other professionals, professional support groups, etc.
Many adults have lived and died not knowing they had Autism or Asperger syndrome. Some benefits of an adult diagnosis include:
Knowledge and self-understanding of oneself and also for family members, friends, co-workers and/or partners
Access to appropriate therapy, medication, support and services
An answer for past experiences and challenges
Permission to ease up on oneself
Possible prevention of other conditions or disorders (i.e., personality disorders, difficulties distinguishing between reality and fantasy), difficulties with work, the law and court system and/or suicide
Prevention of mis-directed treatment
Learning about how one thinks (see the Autistic Brain, by Dr. Temple Grandin)
Identifying strengths, abilities and gifts
There are both benefits and costs to disclosing a diagnosis. Disclosure should be considered thoughtfully and used only if there is is potential benefit.
Who should I look for to help me? How can I find someone to help me?
Today, there are few professionals in the world trained and experienced in assisting females. At this time, the most important factor to look at is “Does the professional have both experience and training in the area of female autism”? Are they aware of the inherent gender bias? What types of assessment tools do they use? What is involved in an assessment? Do they use adult assessment tools? (Yes, I have had two clients tell me that child assessment tools were used on them).
Please contact me at firstname.lastname@example.org if you or you know of someone who would like to be added to this database.
Common Pathways to an assessment or diagnosis
Having a child being assessed or who is formally diagnosed with Autism
Difficulties with work or a current relationship
Discovering and learning about female Autism, aka self-diagnosis
A family member has recently or in the past received a diagnosis
Stalking and/or becoming involved in other criminal activities
I have read your writings and book I Am AspienGirl and it fit like a glove. Can you provide an assessment for me?
Yes, Tania regularly provides comprehensive impressions assessments across the lifespan. The vast majority of adults (both male and female) Tania has assisted are wanting a self-diagnosis confirmed formally. She is also in touch with other professionals who work in this area and also regularly refers to other appropriate professionals at the appropriate time. She can be reached at email@example.com
I really identify with the writings available on female Autism but I am not sure I want a diagnosis? Is Tania available to for sessions other than assessment?
Yes, Tania regularly provides services which may focus on assessment, diagnosis, problem solving, the pros and cons of a diagnosis, the pros and cons of disclosure, career directions, managing stress, anxiety, sensory sensitivities, “What Next” after a diagnosis, the different types of Autistic thinking, gender dysphoria, social difficulties and social skills, relationship difficulties, synaethesia, hyperempathy and the topic of being an “empath”.
For more information about the adult female phenotype, the sequel to the eLIT Gold Medal Award winning I am AspienGirl, entitled I Am AspienWoman: The Characteristics, Traits and Abilities of Adult Females on the Autism Spectrum is in press and due for release September 2015 and is based on her blog entitled “Aspienwomen: Adult Women with Asperger Syndrome. Moving towards a female profile of Asperger Syndrome”
Tania A. Marshall is an award winning and best selling author, a 2016 and 2015 ASPECT Autism Australia National Recognition Awards Nominee (Advancement category) and a psychologist. Her first book, I Am AspienGirl: The Unique Characteristics, Traits and Gifts of Females on the Autism Spectrum, Foreword by Judith Gould, UK, is a Amazon best-seller and a 2015 IPPY eLIT Gold Medal Book Award Winner.
I Am AspienGirl has been translated into both Spanish and Italian (release dates of July and August 2015 respectively). Additional completed translations include: German, Japanese and Brazilian Portuguese. Other languages currently under completion include: Dutch, French, Norwegian (by SPISS), Hebrew and Chinese.
Tania has completed the sequel to I Am AspienGirl, entitled “I am AspienWoman: The Unique Characteristics, Traits and Strengths of Females on the Autism Spectrum, foreword by Dr Shana Nichols (lead author of Girls Growing up on the Autism Spectrum). The release was 2015. This book includes a section of 24 females, all diagnosed as on the Spectrum, showcasing their strengths and also offering important advice to others. Tania is proud to announce that her 2nd book “I Am AspienWoman” recently won an IPPY eLIT Gold Medal in the “Women’s Issues” category.
Tania is an Australian psychological society (APS) autism identified medicare provider,
helping children with autism (HCWA) early intervention service provider, a better start early intervention provider and an Australian government medicare approved mental health provider. She is also a trained Secret Agent Society (SAS) social skills practitioner.
Tania can be reached at Admin@centreforautism.com.au for clinic or Skype remote impressions assessments, consultations, problem solving sessions, skills acquisition and intervention, interviews, book translations, presentations or workshops. She divides her time between busy full-time private practice, research and writing her book series.
Tania’s other books include: