Autism in pink: women with ASD

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Merino MartĂ­nez, MarĂ­a (Austismo  Burgos  Association  in  Spain)  A bout A utism in Pink The  Autism  in  Pink  project  is  an  innovative  EU-­â€?funded  partnership  between  four  European  autism  organisations  which  has  been  set  up  to  carry  out  research  into  autism  in  women.  It  will  look  into  the  prevalence  of  autism  amongst  women  in  the  participating  countries,  and  assess  the  competences  and  needs  of  women  with  autism,  in  order  to  provide  support  and  education  both  for  women  on  the  spectrum  and  for  their  parents,  carers  and  teachers,  as  well  as  social  care  and  health  professionals.  Focus  groups  and  workshops  will  be  conducted  in  order  to  help  inform  the  development  of  a  new  approach  to  learning,  to  give  women  with  autism  the  skills  they  need  to  deal  with  issues  that  can  be  challenging  for  those  with  autism,  such  as  health,  standard  of  living  and  personal  relationships.  Partners involved in L L P A utism in Pink The  consortium  consists  of  4  project  partners  from  United  Kingdom,  Lithuania,  Spain  and  Portugal.  They  all  have  rich  experience  and  knowledge  about  autism  and  regularly  implement  different  education  programmes  for  them  and  their  families.  National  Autistic  Society  has  the  richest  experiences  in  dealing  with  people  with  ASD.  It  is  the  only  organization  so  far  that  recognized  the  problem  of  women  with  ASD  and  their  requirement  for  adapted  services.  In  addiĆšĹ?ŽŜ ƚŽ ƚŚĞ Ĺ˝ĆŒĹ?Ä‚ĹśĹ?ÇŒÄ‚ĆšĹ?ŽŜ ƚĞĂž͛Ć? ÄžÇ†ĆšĆŒÄžĹľÄžĹŻÇ‡ Ć?ĆšĆŒĹ˝ĹśĹ? research  competences  this  makes  the  NAS  the  most  competent  organization  in  the  EU  to  address  the  challenge  of  women  with  ASD.   Edukaciniai  projektai  is  an  experienced  organization  in  the  field  of  education  provision,  social  inclusion  of  vulnerable  social  groups  and  implementation  of  innovative  social  initiatives.  Their  experiences  will  be  most  valuable  in  the  implementation  phase  of  the  project  and  in  evaluation  ŽĨ ƚŚĞ Ć‰ĆŒĹ˝ĹŠÄžÄ?Ćš Ç ĹšÄžĆŒÄž ƚŚĞ Ĺ˝ĆŒĹ?Ä‚ĹśĹ?ÇŒÄ‚ĆšĹ?ŽŜ͛Ć? ÄžÇ†Ć‰ÄžĆŒĆšĆ?  will  able  to  use  all  their  previous  experience.  Federação  Portuguesa  de  Autismo  is  the  representative  organization  in  the  field  of  autism  in  Portugal.  Its  activities  and  goals  correlate  with  the  aims  of  the  proposed  project.  Its  team  is  being  involved  in  many  research  activities  and  has  strong  national  and  international  network  which  makes  it  a  valuable  partner  in  dissemination  and  exploitation.  Apart  from  this,  the  organization  has  40-­â€?year  experience  in  dealing  with  people  with  ASD  and  this  knowledge  will  be  used  in  the  project  while  developing  the  learning  approach  for  women  with  ASD  and  in  its  implementation.  Autismo  Burgos  has  rich  experience  in  providing  different  services  for  people  with  ASD  and  in  participating  in  innovation  projects.  This  experience  will  be  used  for  development  of  the  learning  approach  and  especially  for  its  implementation  where  the  expertise  of  the Â Ĺ˝ĆŒĹ?Ä‚ĹśĹ?ÇŒÄ‚ĆšĹ?ŽŜ͛Ć? ƚĞĂž Ĺ?Ĺś ƚŚĞ ĨĹ?ĞůĚ ŽĨ ĂƾƚĹ?Ć?Ĺľ Ç Ĺ?ĹŻĹŻ žŽĆ?Ćš ǀĂůƾĂÄ?ůLJ Ä?Äž ĆľĆ?ĞĚ͘ Ć? ƚŚĞLJ ŚĂǀĞ ÄžĆ?ƚĂÄ?ĹŻĹ?Ć?ŚĞĚ strong  international  network  and  regularly  cooperate  with  public  institutions  they  will  also  lead  exploitation  activities. Â

Abstract

Autism spectrum disorders (ASD1Ϳ ĂƌĞ ƚŚĞ ǁŽƌůĚ͛Ɛ ŵŽƐƚ ĐŽŵŵŽŶ ĚŝƐŽƌĚĞƌƐ͘ On March 27, 2014, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 68 children (1 in 42 boys and 1 in 189 girlsi),2 other studies stimated 1:100 (Baird et al 20063). The situation is especially critical for women because in their cases ASD is often overlooked or diagnosed very late. Researchers suggest that many more girls are on the autistic spectrum than previously thought. One in five women with an eating disorder is thought to have ASD and out of 150 women with acute anorexia or bulimia up to 60% also develop the psychological signs of autism. The lack of diagnosis can have catastrophic effects. Low self-­‐esteem can cause self-­‐ harming end even suicide and social naivety can lead to bullying and sexual exploitation.

Beside health problems, women with ASD are severely affected also by economic and social problems. Due to the specific characteristics of ASD such as impairments in social interaction and communication, lack of flexibility of reasoning, difficulties in predicting different social ƐŝƚƵĂƚŝŽŶƐ͕ ůĂĐŬ ŽĨ ĂďŝůŝƚLJ ƚŽ ŐĞƚ ͞ƚŚĞ ǁŚŽůĞ ƉŝĐƚƵƌĞ͕͟ ĞƚĐ͘ ǁŽŵĞŶ ǁŝƚŚ ^ ŚĂǀĞ ůĞƐƐ opportunities to become independent in social and financial aspect. They have very few possibilities to equally participate in education and training which increases the possibility for their unemployment and poverty later in their life.

The European project partnership Autism in Pink has been focus of these challenges and seriousness position of women with ASD. The main project purpose is to contribute to the social inclusion of vulnerable group of young women with ASD and to provide them with key knowledge and skills in the field of gender identity, independent life and social interactions in order to improve the quality of life of women with ASD. This proposal has as specific goal show the main difference that we already find in women with ASD, looking through the cultural difference and the perspective of quality of life. Our research methodology was combined the focus groups with women and family, also interviews ǁŝƚŚ ƐƉĞĐŝĂůŝƐƚƐ͛ ƚŚĂƚ ǁŽƌŬ ĚŝƌĞĐƚůLJ ǁŝƚŚ women and ASD and workshops centered in gender perspective social and communication skills. The main tool that we have been used for compilation and data analysis has been Personal Wellbeing Index (PWI), and we have centered intervention and research through the ĨŽůůŽǁŝŶŐ ĂƌĞĂƐ ŽĨ ǁŽŵĞŶ ǁŝƚŚ ^ ůŝĨĞ͛Ɛ ;standard of living, health, achieving in life, personal relationships, personal safety, community connectedness, future security, spirituality and religion).

We found important differences in self-­‐perception, and relevant specific feelings of being misunderstanding, vulnerability about her own security, and her perception in the respect of her own believers and her future security, all this perceptions are also mediated by cultural parameters, such awareness and access to specific services.

1 Autism spectrum disorder ± includes classic autism, Asperger syndrome and pervasive developmental disorder.

2 Community Report from the Autism and Developmental Disabilities Monitoring (ADDM) Network. www.cdc.gov/autism Community Report from the Autism and Developmental Disabilities Monitoring (ADDM) Network.

3 Baird, G. et al. 2006. Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Available at: http://www.ncbi.nlm.nih.gov/pubmed/16844490 (20.07.2011).

Introduction Boys were almost five times more likely to be identified with ASD than girls; 1 in 42 boys and 1 in 189 girls were identified in the last study from the Center for Disease Control and Prevention (CDC), published in March, 2014. Given this marked sex discrepancy, most interventions, training programs and research has focused on boys and men. Professional look inside autism could be also influence by the fact that gender theorists have shown that autistic traits are often culturally associated as masculine patterns rather than feminine, first descriptions of ASD by Kanner and Asperger also reported that autistic behaviors were more pronounced and frequent in males than in women. Despite this facts and history of autism, some researches started to detect differences that could be important to take on account in the needs and recommendations to increase equality in the screening, the diagnosis and the services for women with Autism.

Girls and women with relevant symptoms of ASD may be diagnosed with other disorders, such as social phobia or borderline personality, instead autism (Attwood, 2007), they are identified later than boys with high functioning autism. The specific delayed diagnoses of girls with autism could be linked with IQ and high verbal ability and female sex may cause clinicians to fail in their recognition of ASD (Baird et al. 2011) Developmental Functioning Numerous studies of older children with ASD report that girls have deep and are more likely to have intellectual disability, than boys (Wing 1981; Lord et al. 1982; Tsai and Beisler. 1983; Lord and Shopler. 1985; Volkmar et al. 1993; CDC 2007). Some studies evidenced than boys and girls in the ASD have similar traits of strengths and weaknesses (Carter et al. 2007; Hartley and Sikora. 2009). Boys and girls show special skills in visual reception and fine motor skills, boys outperformed in nonverbal problem solving ability, and advanced social functioning. These studies reflect similar pattern in social reciprocity and differences in stereotyped and repetitive behavior which is more common in boys than in girls, other studies shown a discrepancy with the interpretation about stereotype and confirm that boys showed more repetitive and stereotyped behavior as from the age of six, but not below the age of six (Van Wijngaarden-­‐ Cremers et al. 2014). Boys with ASD showed more unusual visual responses and severe stereotyped and repetitive interests (Lord et al. 1982; Hartley and Sikora. 2009; Van Wijngaarden-­‐Cremers et al. 2014). Other studies (Bölte et al, 2012) showed that females with ASD outperformed males on executive functioning ability and in particular foresighted planning and reduced speed of stopping processes (Lemon et al, 2011) behavioural consequences linked to ASD and poor response inhibition would also presumably further impair social relating abilities, especially when states of arousal are high (Lemon et al, 2011).

Exist also discrepancy between social symptoms, some studies reported more problems in girls (Tsai and Beisler. 1983; McLennan et al. 1993; Holtmann et al. 2007), others have not found

gender differences (Carter et al. 2007, Amr et al. 2012), and others showed fewer socio-­‐ communication difficulties in females, mores self-­‐reported autistic traits and more lifetime sensory symptoms (Lai et al, 2011), one study showed that boys with ASD were more likely than girls to lack best friends, while girls more often interacted with young children (Kopp and Gillberg. 2011) There is a lack of studies basis on gender differences about performing in diagnostic tools such as Wechsler Scales, Koyama et al. 2009 make the first study to focus on sex differences in the cognitive function of children with high functioning autism, they find some similarities in the verbal domain and differences in the nonverbal domain. Both males and females showed a weakness in their ability to comprehend social contexts, but the girls did not show a detail-­‐ focused visual processing.

Cultural perspective about women with disabilities and autism Women status change with cultural, socio-­‐economic, political and religious statements.

Disabilities make a difference and add a challenge to the women in their societies. In conservative societies where the status of women is relatively low, it has a particularly negative impact, diversity of situations since increase their vulnerability to violence and ƵŶĞŵƉůŽLJŵĞŶƚ ƚŝůů ŚĂǀĞŶ͛ƚ ŐŽƚ ƌĞĐŽŐŶŝƚŝŽŶ ĂďŽƵƚ ƚŚĞŝƌ ĚŝĂŐŶŽƐƚŝĐ ĂŶĚ ĞǀĞŶ ƚŚĞŝƌ ƌŝŐŚƚƐ ĐŽƵůĚ coexist in these moments. We just point a general overview in Arabia and Europe in this article.

The issue of Arab women with disabilities should be tackled within the overall framework of women's development in the Arab world. Mainstreaming of Arab women with disabilities in education, training and employment should be a priority action since nineteens.

Some facts about gender discrimination exist in Arab women with disabilities, they still under-­‐ enumerated due to prevailing negative social attitudes. Also, available literature on gender and disability is limited. Public awareness of capabilities and dignity of women and men with disabilities should be boosted and their social integration should be promoted. They exist also ĚŝĨĨĞƌĞŶĐĞƐ ďĂƐŝƐ ŝŶ ĞĐŽŶŽŵŝĐ ƐƚĂƚƵƐ ƐŽŵĞ ĐŽƵŶƚƌŝĞƐ ĚŝĚŶ͛ƚ ĚĞǀĞůŽƉĞĚ ƐƉĞĐŝĨŝĐ ƐĞƌǀŝĐĞƐ Žƌ education in Arabian countries and some families support their familiars in home schooling, like in other parts of the world such Asia Africa or Europe.

Europe has differences in the treatment, research, legislation and development of specific services for people with ASD, and has not developed until Autism in Pink project learning and training frameworks that center their interest specifically on women with ASD. Some of the most relevant differences are the inexistent of quality studies of prevalence in most countries, just UK, France, Denmark, Germany, Sweden, Ireland and Portugal has developed prevalence reports (Fombonne, 2009), other countries such Spain has some initial attempts but non consistent data, gender ratio showed high differences between countries, some explanations for these are the inexistent of specific tools for screening and diagnosis in women.

From countries that have been involved in this project only in the UK has a study been made in adults with autism. This is the population most likely to inform on the prevalence of females.

Otherwise prevalence data do not include those diagnosed in adulthood.

There has been no large-­‐scale definitive study of females with autism and no studies of the prevalence of autism in female adults.

For far too long, women and girls with autism have been invisible, both to the advocates of ǁŽŵĞŶ͛Ɛ ƌŝŐŚƚƐ ĂŶĚ ŽĨ ĚŝƐĂďŝůŝƚLJ ƌŝŐŚƚƐ͕ ĂŶĚ ƚŚŝƐ ŚĂƐ ŝŶĐƌĞĂƐĞĚ ƚŚĞŝƌ ǀƵůŶĞƌĂďŝůŝƚLJ͘ tŽŵĞŶ ĂŶĚ ŐŝƌůƐ ǁŝƚŚ ĚŝƐĂďŝůŝƚŝĞƐ ;tΘ't Ϳ ĂƌĞ ůŝŬĞůLJ ƚŽ ĞdžƉĞƌŝĞŶĐĞ ƚŚĞ ͞ĚŽƵďůĞ ĚŝƐĐƌŝŵŝŶĂƚŝŽŶ͕͟ ǁŚŝĐŚ includes the gender based violence, abuse and marginalization. As a result, women with disabilities often must confront additional disadvantages disabilities like the women without disabilities (Helander; 1998; Conference to the Convention, on the Rights of Persons with Disabilities, 2012) Other facts are the under representatively of women and girls with disabilities in the work on women, disability rights and development, including lack of presence in leadership and their participation in the decision making in political, economic and social spheres. If we take on account that Autism Spectrum Disorders are defined by the lack in social and communication skills, and restrictive behaviors their possibilities to develop her self-­‐defense are really conditioned by the syndrome.

Quality of Life and Personal Wellbeing Index To our knowledge, no previous studies have investigated sex differences in quality of life in autism using the Personal Wellbeing Index, these measures has been more developed to search quality of life in families that directly in people with ASD. As Schalock (2000, 2004) reminds us, understand human condition need to get external information: objective and internal perception of the reality: subjective. The former is simple to measure and forms the basis of life quality judged by such traditional criteria as medical health and wealth. Personal wellbeing index (PWI) is more difficult to measure reliably and validly, most particularly in people with intellectual disabilities (ID) and autism.

Some studies has been developed about specific issues in quality of life such as health habits, more detailed food habits, shown that girls with high functioning autism spectrum disorders will have more eating problems than their typical developing peers (Fishmanet al. 1996; Gillberg et al. 1996; Kalyva. 2008). Some explanations related food disorders in girls with ASD to sensorial hyper selectivity, fixation in details and their preference for routine and sameness (Williams et al. 2000) Method Participants Convenience sampling was used to recruit 48 women volunteers to participate in Autism in Pink Project, from these sample 25 has intellectual disability and 23 has been diagnosed by Asperger Syndrome or PDD.

They were recruited from government and non-­‐government organizations and agencies that provide services or programs for people with autism

Table 1. Main characteristics of women participants

Combined basic data Number of female participants with autism Average Age Average Age at diagnosis Disability Assessment Schedule Receptive language: a. Lacking b. Simple orders c. Practical tasks d. Personal experiences or needs Expressive language: a. Lacking b. Simple words or gestures c. Words or gestures to express personal needs d. Words or gestures to express personal experiences e. Events that do not involve personal experiences Social interaction a. Does not establish relations b. Seeks and responds only to physical contact c. Establishes relations only to satisfy personal needs d. Initiates social contact e. Maintains social contact with people she knows f. Maintains contact with other people Immediate echolalia a. Insufficient language b. Rare or non-existent c. Frequent Delayed echolalia a. Insufficient language b. Rare or non-existent c. Frequent d. Daily Complex stereotypical behaviour and routines a. Absent or rare b. Slight routines or obsessive behaviour c. Intense and maladaptive stereotypes

UK

Portugal

Spain

Lithuania

Combined

12

12

10

12

46

30 22

25 5.5

25 11

26 Child

26 Child

4 8

3 4 5

1 2 1 6

9 1 1 1

10 6 10 20

2 2 2

2 2

5 5 1

7 9 5

4

3

1

1

9

8

3

5

1

2

16 4 3

7 3

3

2

5

4

3

1 3

4

5

2

11 1

4 7 1

1 8 1

7 3 2

12 29 5

9 3

4 7 1

2 5 3

7 4 1

13 25 8 0

12

3 8

1 5

6 5

10 30

1

4

1

6

4

1 14 11

Instruments

The approach has been to assess the existing quality of life using standardized instruments the COMQOL and PWI (Cummins, 2009). These are both compatible with EU statements on quality of life and within the range of technical competence and resources of the partner organizations to administer. The initial partner meeting identified aspects that would influence the choice of the instruments used. These included inter alia, the size and heterogeneity of likely populations, technical resources, language and context and the compatibility with organizational and local culture.

Using these instruments allows a robust qualitative approach to identify themes and sub-­‐ themes and a narrative that will inform the development of the materials. This will also form the structure for the production of learning materials and their evaluation.

Focus groups were developed in each country to get a better understanding and go further in the comprehension of PWI domains impact in women with ASD. Focus groups were attended by women with autism, parents, careers and professionals.

Innovation aspects of the project

The project therefore contains the following innovation aspects: x The main innovation of the project is its engagement of a specific target group.

Women with ASD are generally neglected social group and on the EU level their needs have never been systematically addresses. x The project has developed a learning approach specifically for them. It will combine processes of informal learning, experience and incidental learning and on the other side it will address challenges topics such as gender identity, mental health, establishing relationships. These topics never make part of social skills trainings for people with ASD. x The project has developed training materials, film, self-­‐reported stories of life and recommendations for policies, families and professionals x The knowledge gained in this project will importantly help the target group to empower themselves not only as disabled persons but also as women which other programmes do not do. x Through the project women have empowered in terms of active citizenship, their rights as disabled and as women.

Discussion

The majority of ASD has focused in objective traits and in male, women and internal perception is underrepresented.

The perception of participants in quantitative terms has shown a positive outlook around all the PWI items (standard of living, health, achieving in life, personal relationships, sense of feeling safe, community inclusion, future security) they are difference between countries that could.

These data showed different limitations; groups has been conformed has different situations, services provides in each country, socio economical differences, and discrepancy between punctuation and narrative provided by the participants, families and professionals and the abstract character of the topics and secondly the difficulty that women with autism have to assess their own needs and for insight.

About qualitative data obtained by focus groups there exist a general perception in women with autism, professionals and families that the standard of living depends on their families and on the social context that should be notice as unexpected due to economic crisis. Women also perceive discrimination in access to employment, also they perceive and related differences in comprehension of comfort, material goods, they expected experiences linked to their interests or the sensitivity more than conventional standards. They show discrepancies between her expectations and her achievements and perceive that is more difficult for them to reach and plan specific goals.

Participants has been treated with pharmacology and experience secondary effects, they also has comorbidity with other disorders such anxiety, depression, obsessive compulsive, food disorders, hearing impairment, allergies, gastrointestinal disorders, just to mentioned the most common pathologies in the participants. Access to health system is experience with uncertainty and fear.

Most of verbal women describes feelings of isolation and related experience of bullying, vulnerability to abuse and feelings of ďĞŝŶŐ ŵŝƐƵŶĚĞƌƐƚĂŶĚŝŶŐ͕ ƚŚĞLJ ĚŝĚŶ͛ƚ ĨĞĞů ƚŚĞLJ ĐŽƵůĚ participate in standard community activities without support and neither feel that they could achieve intimacy in relationships like having real friends or a couple but they also have romantics feelings about love and true friendship, some participants has been experience positive goals in these topics.

Future security creates uncertainty, show no confidence in their ability to live by themselves, and express fear and insecurity at the prospect of losing their parents. Rely on the support of the institutions but find it complex to plan or foresee their future in the medium and long term.

Spirituality or the meaning of life showed a broad diversity. Has being complex to evaluate in the group of women with intellectual disabilities, we found large differences marked by cultural inputs, family beliefs and thinking styles. For some participants have no religious belief logic, while others report extrasensory perceptions that relate to a mystical explanation, and for other religion is a belief set and a source of security. Women with AS, experimented the importance of art and sensory experiences as something mystical.

We need gender-­‐sensitiveness in ASD particularly in following fields: health (comprehension and diagnosis), education, employment, violence, family rights and participation in public life, statistics and data collection and monitoring

The main limitation to this study is a small sample size; which limits statistical representation, so these findings must be considered preliminary. This study indicates for first time the importance that double discrimination of being a women with Autism has in our society.

Acknowledgements: Researches in Autism in Pink: Sylvia Kenyon, Richard Mills, Judith Gould, (National Autistic Society), Isabel Cottinelli (Federaçao Portuguesa de Autismo), Arlandas Makunas, Simona Adnavaciute, Edukaciniai projektai, María Merino, Mirian Moneo , Javier Arnáiz (Autismo Burgos) This project has been funded with the support of the Lifelong Learning Programme of the European Union. This publication reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained herein

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