dissertation on autism

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A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD)

Victoria milner.

Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, 16 De Crespigny Park, Denmark Hill, London, SE5 8AF UK

Hollie McIntosh

Emma colvert, francesca happé, associated data.

Autism spectrum disorder is thought to be a predominantly male diagnosis, however recent research suggests a smaller gender disparity in prevalence than previously assumed. Accounts of the female experience of autism are important to help reduce likely male-bias in current understanding and recognition of autism. Eighteen autistic females and four mothers of autistic females took part in discussions with a topic guide around diagnosis, impact and coping. A thematic analysis was conducted. Five themes were identified: fitting in the with the norm, potential obstacles for autistic women and girls, negative aspects of autism, the perspective of others, and positive aspects of having autism. We hope that greater understanding of the experiences of autistic females may lead to improved awareness, diagnosis and support for women and girls.

Electronic supplementary material

The online version of this article (10.1007/s10803-019-03906-4) contains supplementary material, which is available to authorized users.

The current qualitative study explores female presentation and experience of autism spectrum disorder (ASD). ASD, hence forth referred to as “autism”, is a neurodevelopmental condition characterised by persistent difficulties in social interaction, social communication and restricted and repetitive patterns of behaviour, from a young age (Diagnostic and Statistical Manual of Mental Disorders-5th edition [ DSM–5 ]; American Psychiatric Association (APA) 2013 ).

A striking feature of autism is the high male to female ratio, which has traditionally been reported to vary across the spectrum; most studies quote 4–5:1, falling to 2:1 where autism is accompanied by significant intellectual disability, and rising to perhaps 10:1 amongst autistic individuals with average or superior intellectual ability (Dworzynski et al. 2012 ). These ratios have been challenged more recently, however, by findings from epidemiological studies with active case ascertainment, which reveal significantly smaller male to female ratios in autism within general population groups (e.g., 2.5:1; Kim et al. 2011 ). A recent meta-analysis (Loomes et al. 2017 ) concluded that the ratio as estimated by methodologically rigorous studies, is likely to be 3:1, and may not change very much across the spectrum or intellectual ability range.

The lower male preponderance in epidemiological studies with active ascertainment, compared to those relying on clinical or educational records, suggests we are under-diagnosing autism in females. A number of reasons for this can be proposed. These include the use of solely male samples in some autism research, which has likely led to a biased understanding of the full spectrum of autism and its manifestations. Lai et al. ( 2015 ) noted that there is an ascertainment gender bias of up to 15:1 in neuroimaging research. Additionally, it has been suggested that recognition of autism and the current methods of diagnosis are based on stereotypes of autism as a male condition (Kopp and Gillberg 1992 ). Extrapolating a largely male model of autism to women and girls could be problematic if, as research suggests, the phenotypic presentation of autism often differs in women (Kirkovski et al. 2013 ). Lai et al. ( 2011 ) investigated behavioural difference in autistic males and females and found that females reported more lifetime sensory symptoms and fewer socio-communication difficulties than males. Furthermore, it has been suggested that compared to autistic males, autistic females are more able to demonstrate reciprocal conversation and are more motivated to initiate friendships (Lai et al. 2015 ). The “special interests” that autistic females adopt may also appear less unusual, focusing on topics similar to those of their neurotypical peers, such as an interest in celebrities or horses; however, the intensity and quality of the interests remain unusual (Gould and Ashton-Smith 2011 ). In addition, consciously copying neurotypical females and employing so-called ‘camouflaging’ may be common amongst autistic women and girls, perhaps contributing to under-diagnosis (Gould and Ashton-Smith 2011 ; Attwood 2006 ). All of these factors may play a part in exaggerating the male preponderance in autism, and result in autistic females not receiving much-needed diagnosis and support, with negative effects on their mental health and well-being (Pellicano et al. 2014 ).

Previous qualitative research into the female experience of autism confirms many of these issues. Bargiela et al. ( 2016 ) conducted a qualitative study with a group of adult autistic women (n = 14, aged 18–35 years) whose autistic tendencies had gone unrecognised up to their late teens. They describe the technique of “masking” as a common but not universal tool, used to disguise autistic traits in order to fit in. For several participants, it involved mimicking (an unconscious attempt) or learning (a conscious effort) socially acceptable behaviour. Generally, this was reported as being due to pressure to meet the expectations a neurotypical world imposes. While the women reported they were often successful at masking, it appeared to be a relatively superficial method of coping, with resultant difficulties ranging from constant exhaustion to one woman describing a loss of her own sense of identity (Bargiela et al. 2016 ). Furthermore, the use of camouflaging behaviours has been linked to increased self-reported stress and anxiety in comparison to those who do not camouflage (Cage and Troxell-Whitman 2019 ; Hull et al. 2017 ).

The desire to fit in with neurotypical peers may also influence the use of camouflaging behaviours. An interview study reported autistic girls (n = 10, aged 13–16) were motivated to make friends, yet often imitated neurotypical peers, and masked feelings of unhappiness and anxiety in social situations to prevent relationship breakdown (Tierney et al. 2016 ). A mixed methods investigation of the social motivation and friendship quality of adolescent autistic boys, autistic girls and their neurotypical peers (n = 46) revealed autistic boys were significantly less socially motivated than all other groups (Sedgewick et al. 2016 ). Interestingly, autistic girls reported similar friendship qualities to girls without autism, except in the area of conflict, where the autistic groups (both male and female) reported less conflict in their friendships than neurotypical peers. However, semi-structured interviews uncovered increased aggression within the friendships of autistic girls, suggesting difficulties identifying and potentially managing conflict within friendships (Sedgewick et al. 2016 ). Additional evidence of social and friendship differences between the genders in autism was reported by Baldwin and Costley ( 2016 ) who conducted a questionnaire study (n = 82) and found differences in social attitudes between the sexes. While autistic girls appeared more content in their own company in comparison to the male group, there was also evidence that autistic females find the demands and disappointments of social endeavours more of a burden on their psychological and emotional state.

Qualitative work with parents of autistic girls has also suggested possible sex-specific challenges for autistic girls including the ability to develop and maintain relationships with neurotypical girls (Cook et al. 2018 ; Cridland et al. 2014 ), masking autistic behaviours (Cook et al. 2018 ; Cridland et al. 2014 ) and coping with puberty and sexual vulnerability (Cridland et al. 2014 ).

The current study aims to add to this small but important body of qualitative research. This study aims to gather information from a range of perspectives, both diagnosed and self-diagnosed autistic females and parents of autistic females. We hope the broad scope of the topic guide (Appendix 1) enables reports of before, during and after diagnosis to be collected, as well as positive aspects of an autism diagnoses. By capturing the females’ first-hand accounts, we hope to improve current understanding of the female experience and to minimize the circularity of male-biased autism research.

The current study is the first part of the third phase of the Social Relationships Study (SR Study), one of the largest population-based twin studies of cognition and behaviour across the full autism spectrum (Colvert et al. 2015 ). The longitudinal study has so far established the autism sample when the twins were aged 12–14 and then followed this group up at age 18 to investigate mental health and well-being in young adulthood. The third phase of the SR Study aims to investigate female autism, in terms of symptomatology and experience. However, prior to this third phase of research, a series of discussions were conducted with autistic women (both undiagnosed and diagnosed) to identify core issues and themes to be measured and avoid the circularity of relying on questionnaires and tasks derived from largely male-biased autism research.

Participants

Participants were 18 females with a clinical diagnosis of autism (n = 16) or self-diagnosed autism (n = 2), and four mothers of autistic girls. Inclusion criteria were: (1) female gender, or parent of a female with an autism diagnosis, (2) living in the United Kingdom. Female participants in the autism group were aged between 11 and 55 years. Both clinically diagnosed and self-diagnosed individuals were invited to take part in the discussions to ensure that the groups were as inclusive as possible; thereby tackling the issue of omitting potentially misdiagnosed or undiagnosed women who have high traits of autism. Participant information can be found in Table  1 .

Participant information

Autistic females and mothers of autistic girls were recruited via four routes: adverts on social media, word of mouth, through contacts at a secondary school and through a tertiary referral autism diagnostic clinic. Participants were invited to attend group discussions at the research centre, but when this was inconvenient for the participant, in-home individual discussions and/or telephone discussions were offered. Both group and individual discussions were offered to ensure as many participants could be included as possible, and to reflect the preferences of the participants themselves.

Information sheets were provided via email and/or in person for those who met the researchers face to face. Consent was obtained either in person or via post for those who completed telephone discussions. Four group discussions were held, three of which had two participants each and were held at the research centre and one with five participants, held at a secondary school, specifically for girls with social and communication difficulties. Seven individual discussions were held, six were held at the individuals’ homes and one at the research centre. Four telephone discussions were conducted. Two researchers were present for the individual and group discussions, with the exception of telephone interviews where one researcher was present. All discussions were audio recorded and transcribed. Ethical approval was obtained from the psychiatry, nursing and midwifery (PNM) research ethics subcommittee (RESC).

A topic guide was used for the discussions and included 15 (for the female autism group) or 16 (for the parents) questions (See Appendix 1), covering three overarching topics: diagnostic pathway, impact of autism, and resilience and coping. The questions were designed by the research team and were guided by previous research, the writings of women on the spectrum, and current hypotheses in the research field. They were designed to be used flexibly, allowing the research team to follow participants’ answers and prompt for more in-depth information as appropriate.

Data Analysis

All discussions were audio recorded and transcribed verbatim. Two members of the research team (VM and HM) then followed Thematic Analysis guidelines (Braun and Clarke 2006 ) to identify themes in the data. Following initial coding, both VM and HM regularly discussed and compared codes to create themes and sub-themes and data to support the themes. The themes were checked to ensure coherence, consistency and clarity. There were no disagreements between the coders, however if disagreements were to arise a discussion was planned to be had with a third coder, until agreement was reached.

Parent discussions lasted on average 55.5 min (range = 33–93 min) and the autistic females’ individual discussions lasted on average 46.8 min (range = 12–82 min). The average duration of group discussions (average = 56.75 min) was longer than individual discussions (average 48.7 min) which is to be expected. There were no differences found in the content of the data gathered from group and individual discussions, therefore the authors collapsed the data. No adverse effects were reported by participants and no discussions were terminated before the end of questioning.

Qualitative Analysis

From an abundance of relevant transcript data, five overarching themes comprising seventeen subthemes were identified and are presented in Table  2 .

Thematic analysis

Whilst some of the themes and subthemes have been identified in current literature, we deemed it important to report them in our paper to support existing findings. There were several unique subthemes revealed in our data, for example ‘living in a neurotypical world’, ‘vulnerability’, ‘feeling different’ and the theme of ‘potential obstacles for women and girls with autism’.

To ensure confidentiality, quotes are labelled with “FP” and a unique code to identify quotes from parents, or “FF” and a unique code to identify quotes from the autistic females themselves.

Theme 1: Fitting in with the Norm

This theme encapsulates the attempts, both successful and unsuccessful, that women and girls make to attempt to fit in with their peers and society. We define “norm” as typical and/or expected behaviours.

Subtheme 1.1: Friendship Motivation, Conflict and Maintenance

Friendship was mentioned by the majority of the women, girls and parents as a difficulty faced by females with autism.

All my life is like I didn’t fit in, like I had friends and they weren’t like my proper friends and I’d fall out with them (FF17)

This 40-years-old woman’s quote reflected the experiences of the majority of the participants and demonstrates that although the women were able to make friends, it often felt as though they were not truly part of the group or the same as their peers. One mother made a poignant comment.

I felt at secondary school that they were kind of the left-over girls […] I did feel that they were girls that kind of drifted together because they weren’t in any other group (FP03)

Conflict within relationships was mentioned by several of the females we spoke to.

I was fed up of like getting into almost fights with people and losing my friends and alienating myself (FF17)

Maintenance of friendships was also highlighted as a problem.

I don’t think I have difficulty making friendships, it’s keeping them maybe (FF18)

The difficulties faced with friendships and fitting in with peers often led to feelings of loneliness.

Sometimes I just feel a bit sort of rejected, I do feel lonely (FF16)

It took months for me to finally get a group of friends, I remember at some points feeling depressed and totally lonely (FF04).

All the participants who discussed friendship felt as though they did want friends, and social motivation was a key theme, with all the women and girls demonstrating some desire to have friendships or social contact; however, the females commented that difficulties in social interaction made friendship building difficult.

she desperately would like to have friends and have friends invite her out and do things with her but they don’t (FP04)

I wanted to join in but I wasn’t sure how (FF02)

Subtheme 1.2: Living in a Neurotypical World

Difficulties with social interaction may also lead to problems in day to day life. Individuals with autism are required to live in a neurotypical world where ordinary life is often not tailored to help with problems with social interaction. Several participants commented on the difficulties they face with trying to cope in neurotypical situations, with one mother saying that, although her daughter has several positive qualities, struggling with the norm was exhausting.

She, when she’s doing her job she’s a very professional lady, but ordinary things, ordinary life exhausts her. She is exhausted just by the business of running an ordinary life (FP03)

The concept of coping with “normal” life being exhausting was mentioned by almost all the women and girls. It was highlighted that autistic females are required to adapt their thinking styles to suit the “norm” and cope with the neurotypical world.

You have a different way of viewing things and a different way of doing things which can make it harder (FF07)

The women interviewed shared a variety of different problems faced due to their autism; however, it was felt by numerous participants that if the neurotypical world had a greater understanding of autism, the problems would be almost eliminated.

If we had an understanding in society, if people respected differences and neurodiversity it wouldn’t be a problem, it really wouldn’t (FF18)

I think people need to you know, talk about it really so you know people can understand and appreciate it, you know they don’t […] people like don’t hold the person’s differences against them they can […] celebrate you know their differences (FF03)

However, one woman felt it is important to remember the unique experience everyone has.

Every girl has a completely different experience with autism (FF05)

Subtheme 1.3: The Concept of Gender

Within society, not just within the autism community, the participants stated that females are pressured to be more social than males, however with the added difficulties of being an individual with autism these social pressures are amplified.

There’s a lot more pressure on girls to be a certain way just in general but I think that especially affects girls on the autistic spectrum because we are more different anyway so it’s more difficult for us to be just the same as everyone else (FF13)

You have all the problems of being on the spectrum and then also all the problems of trying to be a woman on the spectrum, so trying to feel like a normal, um, woman I guess (FF10)

The difference in communication style between men and women was also discussed frequently in the discussions. It seemed that the women we interviewed felt that, in general or stereotypically, both autistic and neurotypical males and females have different styles of communication.

Like socially women just kind of like, gather round and talk and or watch things and chat and gossip, and I, I just don’t really get gossip, gossip doesn’t, I don’t know why it exists, why you do it kind of thing, but, so I always kind of I always got on with boys or men better (FF01)

Women socialise by mimicking and guys socialise by just being themselves […] if you are sort of just a little bit different you get sort of estranged from everyone (FF13)

The participants stated that as a female it was more difficult to be accepted by peers of the same gender than it was for males.

I think it’s harder, much harder as a girl because girl peers are less forgiving of other girls. The girls seem to be very tolerant of the boys with autism and almost mother them (FP04)

An alternative view was proposed by one participant, who suggested that differences are individual and not necessarily related to gender.

I guess no two people are the same are they, whether they’re male or female or both female or both male (FF15)

However, the large majority (all but one) felt there were differences between autistic males and females. It was consistently suggested that autistic males feel less pressure to mask or camouflage their symptoms, and that females were more successful at doing so.

Boys are more content to be themselves and it’s like this is how I am, whereas the girls really want to fit in, um, and I think that makes them unhappier (FP04)

I think with males, they never have this um, it’s like what I get down about is feeling like I should have to interact, and they’re more happy to say like, no I wanna do my own thing (FF01)

Two women also commented that these gender differences in masking may contribute to the different rates of females compared to males being diagnosed with autism.

I think that’s kind of the main difference that girls are just better at hiding their autism and yeah that’s probably why people […] that’s probably why people think it’s more guys who get autism because with boys it’s more obvious however girls like maybe it’s like they can just go under the radar so maybe that’s why people don’t think girls with autism exists […] or why it can take longer to get a diagnosis because again they’re just better at hiding their autism, they’re just better at masking (FF05)

It’s almost like if you put me in a room with 100 different men and some of them are autistic I would probably be able to point out which ones are autistic quite easily whereas with women it wouldn’t be that obvious (FF18)

An additional societal pressure felt by some of the women and girls we interviewed was the concept of gender itself. Gender norms are a binary cultural concept that some chose not to conform to.

gender norms, and stuff like that confuse me (FF10)

One mother stated that her daughter finds it difficult to adopt the idea of being feminine.

She chooses to wear masculine clothes because it’s so much simpler, she doesn’t then have to worry about the intricacies of make-up and things, so I think femininity is a big issue (FP03)

Two other females commented that they felt they didn’t relate to their own gender.

How kind of girls socialise, I never really related to (FF10)

I’m no good at being a girl (FF02)

Overall, the participants highlighted several gender differences and problems associated with these difficulties from the perspective of autistic females and parents.

Subtheme 1.4: Coping Strategies

This sub-theme identifies techniques adopted by the women to cope with their disorder. A range of specific coping strategies were mentioned by the women and girls spoken to, however three prominent mechanisms emerged.

Firstly, nearly all the participants stated that they need time alone so as not to become overwhelmed.

Both at school and at home I try to spend as much time alone as I can cause it really does like it gets me in a very calm state of mind so that when I do need to interact with people I’m willing to talk and socialise and stuff (FF05)

Secondly, the need for routine was commonly discussed.

Structure’s very important so if something like didn’t quite go to plan it would cause a bit, it would like throw me out of sync and I wouldn’t like it (FF03)

Thirdly, problems in terms of coping with “normal” everyday situations led onto the idea of masking and camouflaging autistic behaviour to fit in with a neurotypical world and disguise social interaction difficulties. All except three females reported that they camouflaged their autism symptoms.

Girls are really good at, you know, masking and hiding their autism so that it’s harder to identify an autistic girl that you know needs help with the world (FF05)

The three participants who did not report camouflaging their autism symptoms stated that they felt unable to do so as their autistic behaviour was too obvious to others.

I don’t think I have ever had to mask my autism […] I don’t think I could if I tried, I’m crazy all the way (FF07)

Camouflaged… err I’m not entirely sure that’s possible […] even if I tried it wouldn’t work or […] people would sense something quite off maybe (FF04)

Both the autistic women and girls and the mothers of autistic girls commented that neurotypical behaviour was consciously learned, for example, eye contact, in order to fit in and disguise autistic behaviour.

I didn’t want anything more than just to be normal and to fit in so I, really, really tried and I kept you know imitating and copying and making myself look and appear as normal as I could, but yeah I guess it was almost like a special interest (FF10)

The socialising bit because I was so scared, because I didn’t know what to do, so everything I had to learn by observing (FF18)

You’ve probably noticed she makes eye contact but it’s, it’s a bit clunky you know, but she’s learnt to do that (FP04)

Such masking behaviour can have implications. For example, masking behaviour during diagnostic discussions contributes to misdiagnoses and missed diagnoses.

And then you said that there’s a problem and they don’t believe you because you look fine (FF02)

The problem I’ve found is when I’m in social situations I sort of go onto auto-pilot […] and I’m kind of like polite and very British you know and so I found that in the [diagnostic] interview I was acting you know like nothing was wrong which was obviously the worst thing to do (FF13)

Although learning neurotypical behaviours may allow individuals with autism to appear “normal”, it was evident that behind the masks the women were still struggling; several commented on the immense effort it takes to maintain such behaviours.

It’s kind of like a duck on water you know it’s calm on the surface but sort of paddling really hard underneath (FF13)

Whether the females we interviewed felt they masked their autistic behaviours or not, all women and girls commented on the struggles they experienced whilst trying to fit in with a neurotypical world.

Theme 2: Potential Obstacles for Autistic Women and Girls

This theme uncovers the barriers and difficulties faced by the women and girls. The majority of the females we spoke to had already gained a diagnosis of autism for themselves or their daughters. They discussed the difficulties they faced when trying to get a diagnosis and problems faced in terms of support after the diagnosis was received.

Subtheme 2.1: The Struggle of Getting a Diagnosis

Two of the women we spoke to had not yet received a diagnosis and were unsure whether they would pursue one as they had heard of others’ bad experiences. These negative experiences were reflected by the majority of the women who had been diagnosed as adults.

We headed to the nearest café and cried, cried, cried for a day; […] it was the most awful, awful experience (FP03)

It was quite a drawn-out process and quite a pain in the arse to be perfectly honest (FF13)

Despite some reports of a negative diagnostic process, many participants stated they felt relief after receiving a diagnosis.

Once I had the label that I had, I’m like yay, I’m not so crazy after all, I’m not this weird crazy person, I do fit in somewhere (FF17)

Participants reported feeling as if they understood why they had felt different, that they were relieved it was not a problem they had caused, and that they were not alone.

Fewer females are diagnosed with autism than males, and the woman and girls we spoke to suggested that this discrepancy may be due to the tools used and the design of the diagnostic process. These quotes are connected closely to the previously mentioned subtheme “masking & camouflaging”.

Girls are really good at you know, masking, and hiding their autism so that it’s harder to identify an autistic girl that you know needs help with the world (FF05)

That’s the trouble with female ASD is in that time slot of whether they’re going to say yes or no to your diagnosis you could be performing or camouflaging so well that they’re not going to see that (FF01)

The participants suggested that females are able to disguise their autism symptoms which can mean clinicians often mis-diagnosed or completely missed diagnoses.

When I actually got tested I was on autopilot and it meant that I got misdiagnosed (FF13)

Subtheme 2.2: Lack of Appropriate Support

Once a diagnosis was given, one woman reported that there was no after-care, or support given.

The people handling it were you know fine, were lovely, they listened and stuff but afterwards there wasn’t really any support (FF10)

Two women reported that they experienced poor support in schools, being named a “naughty child” (FF11) or a “slow learner” (FF16). One woman felt cheated by the lack of support given.

She now feels very cheated because she feels she should have had specific help, she now knows there was help she could have had that would have made her life easier (FP03)

Theme 3: Negative Aspects of Autism

This theme explores the difficulties faced by the women and girls that are associated with having autism. Within the discussions, additional problems were discussed that, while related, did not directly involve the core diagnostic features of autism.

Subtheme 3.1: Co-morbid Conditions

Sixteen out of the eighteen females suffered from co-morbid conditions. Often, the women and girls had been suffering from conditions such as anxiety, OCD and depression for many years.

My depression started about 19 […] I’ve had that quite a number of years; too long (FF16)

I remember the anxiety, always the anxiety, always… being in class and thinking I know the answer but please don’t ask me (FF18)

Two women also discussed how they felt they had been misdiagnosed with a co-morbid condition instead of their autism.

I was diagnosed with depression briefly but that was obviously the Asperger’s before and so I did, I was treated for that (FF17)

So, I was really, really good at covering up my, what I thought was anxiety and social anxiety (FF10)

Often, it was these co-morbid conditions that caused the main problems in the females’ lives.

I always say I would never change anything but if I could change something it’d be the obsessive compulsive because I can see it tires her out (FP02)

I think probably the anxiety that stems from it, more than anything else […] I’ve missed out on a lot of opportunity because of like fear (FF10)

Subtheme 3.2: Sensory Sensitivities

Apart from co-morbid mental health conditions, sensory sensitivities were reported to play a large role in eleven of the eighteen females’ everyday lives. These sensory issues ranged from the dislike of loud noises, to powerful cross-modal effects.

When she was younger, if I had lilies in the house she’d almost go deaf…. it was like the sensory overload made something else shut down (FP04)

Although largely problematic, some sensory hyper-sensitivities were reported to be a positive experience.

I have the sensory thing as well, like music for me I feel like more intensely than other people I think; to put headphones in is almost more euphoric than a lot of people would experience (FF01)

The majority of females we spoke to, however, found sensory stimulation overwhelming and debilitating, with eight participants stating that they considered their sensory issues the most debilitating aspect of their lives.

The sensory issues are just, it’s the most difficult thing in the world and it’s so distressing and it really does make a difference between, I think, um having life quality or not for me (FF18)

Subtheme 3.3: Meltdowns and Shutdowns

In reaction to overwhelming emotional and sensory situations, several women and girls reported experiencing what they called “meltdowns” and “shutdowns”.

So, shutdown I associate with myself just going like really quiet, I don’t want to interact, um, a meltdown will be like really tearful, upset, angry, distressed, um it’s kind of cathartic to me sometimes (FF01)

As she got older she would, I can’t explain it any other way, close her face, literally shutdown and if, if confronted, that would lead to, you know, bad tempers, and throwing things, not meltdowns but tempers, you have to wait ‘til it came out (FP03)

Often the women/girls labelled these experiences as “overloads” (FF17).

Subtheme 3.4: Dependence/Vulnerability

The females often discussed feelings of vulnerability and dependence. One woman stated that she was jealous of other students in her class who did not need the help she needed. However, the most common mention of vulnerability was in terms of sexual relationships.

I was kind of naïve or gullible… towards people and they would take advantage or something like that (FF01)

You have to try and think a little bit more carefully when you’re around other people and other men, and… cause sometimes you give out the wrong body signals and people pick it up wrongly (FF16)

Subtheme 3.5: Feeling Different

Participants often commented on their feelings of being different to those around them from a young age.

Very different to most people, or as I like to put it, I’m prey in the world of predators (FF07)

I knew that I was different, all, always knew I was different, always I knew it, in so many ways that it’s just unbelievable (FF18)

It was often reported that the women and girls were frustrated because despite feeling that they were different in some way, they did not understand it themselves and were often misunderstood by others.

I thought I was naughty, I just felt I was very different to other children […] in how my brain processed things, I think, and how I couldn’t do what other children could do (FF11)

I knew at some stage that I was different but never really knew or understood it (FF16)

Some individuals found it frustrating and disliked feeling different from other people.

It’s frustrating for yourself if you don’t know, you know there’s something wrong with you but you don’t know what it is (FF16)

I wish I didn’t have the ASD and I wish I could just do what normal people do um, and it, I find it really hard to live with every day (FF11)

One individual reinforced that, although they might feel different, they did not feel that they were inadequate.

It’s just being different it’s not being less or anything so (FF18)

The women also noted problems they had in terms of social interaction and how frustration with not being able to understand neurotypical interaction could arise.

I certainly remember wondering, feeling like normal people have telepath-, the ability to sort of telepathy, like telling each other in their minds what they had broadcast a telepathic message saying let’s kick this friendship off by going to my house and having a party or something and I’m and it’s like I’m not telepathic, I can’t pick up any telepathic messages (FF04)

It kind of feels like you’re an outsider looking in and like there’s this world that you’re just kind of observing from the outside and when you have to get directly involved in it, it can be a bit hard sometimes (FF05)

The intricacies of social interaction can be difficult to learn and understand. Several participants commented on specific problems including not understanding humour, not knowing when to join or add to a conversation, concerns about coming across as rude, and lack of interest in “small talk”. Many women and girls commented that they preferred acting as a “wall flower” or sitting with adults when they were children, as they found social interaction easier that way. Interestingly, one woman commented that although she preferred not to socialise much, it wasn’t the socialising that troubled her, it was the lack of understanding around social interaction.

It wasn’t the socialising that scared me it was not knowing how to do it so (FF18)

Both parents and the females themselves commented on other people’s awareness, or lack of it, concerning autism.

From birth she was quite plainly different, but I hadn’t had any experience to base anything on until I started to study it myself (FP03)

Several females explicitly stated that they believed other people could notice their autism. However, the parents who commented on noticing their daughter being different said that either they had felt they were doing something wrong to cause their daughter to act differently, or they had thought their child was unique and the differences were not a problem. Two women with autism stated that their parents did not believe either the women themselves, or “in autism”.

Subtheme 3.6: Additional Problems

A range of other negative aspects of life with autism were reported, which did not fit into sensory issues or co-morbid conditions. Two participants commented that they have a bad memory and felt it was related to their autism.

That’s the disadvantage of my autism, I have a terrible memory (FF07)

Three women also commented that puberty and sexual relationships were difficult aspects of their lives.

Puberty, and periods, and relationships and sex and all that kind of stuff, that was incredibly difficult growing up (FF01)

Theme 4: The Perspective of Others

This theme considers how other people, including peers and family members, understand and are impacted by autism. From speaking to mothers of autistic girls, we were able to gain information on the impact autism has on the wider family, not just the individual themselves. The mothers spoke of feeling isolated, family breakdown and narrowed social lives. Two of the autistic females we spoke to also gave insight into running their own families. One stated that being a mother is more important to them than being a autistic woman.

Subtheme 4.1: Girls can be Autistic Too!

The mothers, woman and girls interviewed were very passionate about a need for greater understanding of autism, and in particular autism in females. The lack of understanding of autism in the general population has caused problems for the families interviewed.

It’s almost like, um, it would be contagious or something like that, it’s like ‘keep my children away!’ (FP04)

It feels difficult like other people don’t really understand your needs, so like I’d be having a breakdown in the middle of Costa and people would be like pulling their children away and it’s like they don’t understand, they just think I’m a naughty child (FF06)

Although research is improving in the field of autism, one female expressed the need for a greater understanding of girls with autism.

I think it would be nice for people to realise that autism can affect girls (FF12)

Subtheme 4.2: Parental Attitudes

Mothers of autistic girls discussed their personal feelings towards having a child with autism. One mother commented on the concern they felt about their child achieving the life they anticipated for them.

You grieve for the child that you didn’t know you thought you had…will she ever get married; will she ever go to university… (FP04)

Theme 5: Positive Aspects of Autism

This theme highlights some of the benefits of being autistic and ways females have learnt to understand their disorder. Not all aspects of having autism are negative, as reported by our participants.

Subtheme 5.1: Benefits of Autism

A common positive of having autism mentioned in the discussions was being able to see the world from a different and unique perspective.

I’m starting to appreciate more and more that like the way I see the world is, can be a benefit (FF10)

I’m unique in my own way that makes me feel that I am a unique part of the world (FF07)

Other benefits of having autism ranged from having long attention spans and good memory, to having an improved sense of empathy and greater creativity. Only one woman we asked was unable to think of a positive aspect of having autism.

Subtheme 5.2: Accepting Autism and Understanding Why You’re Different

Importantly, some participants mentioned that having autism is not a definitive feature of an individual’s life.

I know that I am different, and I don’t think it matters to anybody else if I am different because I don’t think autism is a way to define a person, it’s more the way they act, and how they feel (FF07)

Subtheme 5.3: Strong Sense of Justice

Interestingly, several females and parents commented on autistic females having a strong sense of justice.

It’s wonderful that she has this fantastic moral compass and she always wants to stick up for people because she’s had problems and she’s been bullied and she wants to stick up for everyone, but the way in which she wants to do it puts herself at a risk… (FP02)

The need to stand up for those who cannot stand up for themselves was a recurrent theme.

The current study aimed to minimise the circularity of exploring female autism within a primarily male-biased field. From speaking to the women, girls and mothers, we have gained an insight into the first-hand experiences of females who identify as being autistic and have reported a vast amount of information and a wide range of themes and subthemes.

As our topic guide included a range of open discussion points, our participants had the freedom to discuss their own experiences in depth, resulting in several holistic accounts and an abundance of information to explore. The broad variety of opinions, resulting from including females within a wide age range and stages of diagnosis, gives our project a unique quality. As we have not focused solely on one area, for example friendships or camouflaging, we are able to explore both positive and negative aspects of the female experience, and several novel themes. The experiences of the females we met overlapped considerably and the few contradictions in the data, such as not all women feeling able to mask and/or camouflage their symptoms, are discussed further within this section. Overall, the data was largely cohesive, and as autism is a heterogenous disorder, it is acceptable and expected that some disagreement in subjective experience arose.

The women and girls in this study reported adopting strategies to mask and camouflage their autistic behaviours. During discussions women who believed they successfully masked their symptoms reported how they might learn stock phrases in social etiquette or consciously study the “appropriate” amount of time to maintain eye contact. Similar findings have been found in previous research, for example Dean, Harwood & Kasari ( 2017 ) found that school-aged autistic girls were more likely to adopt compensatory social behaviours than their male peers, which further suggests that females are more likely to be overlooked and potentially have difficulties gaining a diagnosis.

It is unclear whether camouflaging behaviour is a protective or a harmful technique. Many women report negative consequences to this behaviour such as exhaustion and poor mental health (Bargiela et al. 2016 ; Lai et al. 2011 ). We did not include a comparison group of autistic males; therefore, it is unclear whether this strategy could be considered a specific feature of female autism (Bargiela et al. 2016 ). In fact, Hull et al. ( 2017 ) found both males and females report using camouflaging techniques. Interestingly, not all women in our sample felt masking and camouflaging their autism was useful or even possible; it remains unclear what drives and allows individuals to use such techniques.

Evidence from the discussions supports the premise that autistic females struggle to initiate and maintain relationships and resolve conflicts within friendships (Sedgewick et al. 2016 ; Kirkovski et al. 2013 ). A common misconception is that individuals with autism do not desire or seek friendships and social interaction, however, despite our participants reporting difficulties with friendship formation and maintenance, the discussions demonstrated that many autistic females are socially motivated. The women and girls we spoke to all wanted friendships, yet often reported feelings of loneliness. This finding was also reported by Sedgewick et al. ( 2016 ) who interviewed adolescent males and females and found that autistic females were as social motivated as their neurotypical counterparts, while autistic males were less socially motivated in comparison to autistic females and neurotypical males and females. Autism literature supports the idea that females are more interested in social relationships than males, perhaps indicating a somewhat distinct autism phenotype in females.

It is unclear whether the gender differences in nuanced communication and behaviours described by our participants are unique to an autistic population, as we did not compare our volunteers to a neurotypical sample. McVey et al. ( 2016 ) suggested that social nuances in female communication are more complex than those found within male communication. This notion was echoed by one of our participants, who claimed she found it easier to communicate with males because their communication styles were clearer, and they found relationship maintenance less challenging. Kanfiszer et al. ( 2017 ) reported similar findings, with women reporting they felt different to societal gender norms, and felt their interests were more aligned with those of male than female peers.

A general lack of understanding about female autism symptomology, including camouflaging behaviour and interest in social relationships, is suspected to lead to many women receiving a late or delayed diagnosis (Haney 2016 ; Bargiela et al. 2016 ; Gould and Ashton-Smith 2011 ; Giarelli et al. 2010 ). A study investigating maternal concerns also highlighted the impact of delayed diagnosis (Navot et al. 2017 ). Mothers reported a lack of clinician awareness of female autism and difficulties gaining a diagnostic referral despite raising concerns early. This resonates with the reports some of the women and girls in our sample gave of poor diagnostic processes, and further highlights the need for a greater understanding of female autism. Additionally, these findings possibly support the notion that diagnostic tools are biased towards male presentations of autism.

The participants in our study linked masking behaviour to delayed diagnosis and delayed access to support for autistic females. Tint and Weiss ( 2017 ) findings reflect this and go on to discuss various unmet needs including employment support and mental health support. Baldwin and Costley ( 2016 ) found participants who remained undiagnosed up until 18 years of age or after were much less likely to receive adequate educational support than those who received an earlier diagnosis while in education. It has also been reported by parents of autistic females that they’ve felt “at war” with schools in order to gain appropriate support for their child, and even schools not implementing individualized education plans despite the plans being put in place (Mademtzi et al. 2018 ).

Despite a largely negative view towards their experiences of autism, an encouraging finding is that the females identified several positive aspects of being autistic. Although previous research has reported the positive experience of gaining a diagnosis (Bargiela et al. 2016 ), more specific positive aspects such as those mentioned in our data are often underreported.

Study Limitations

This study provides useful information towards improving understanding of the female experience of autism. However, there are some methodological factors that may limit the generalizability of these findings. Firstly, the small sample (n = 22), although typical of qualitative studies, makes it difficult to explore how race, ethnicity, background or social-economic status might affect these findings. Furthermore, as is common with qualitative studies, the small sample size means findings may not be representative of all autistic women.

Whilst the inclusion of self-diagnosed autistic females is a step in the right direction as current research literature highlights the potential for missed or misdiagnosis of females, the small number (n = 2) of participants in comparison to diagnosed females (n = 16) is not ideal. However, as this was a small-scale study, and no differences were found between the responses of self-diagnosed and diagnosed participants, the authors deemed it acceptable to include these participants in the sample. It is not known whether there is a difference between self-diagnosed autistic individuals who actively seek a diagnosis in comparison to those who do not. This would be an interesting area for future research.

Furthermore, a recruitment bias may pertain; participants in the discussions volunteered to take part. It could be argued that individuals “coping better” are more likely to volunteer to speak about their experience, and so we may not gain an accurate perspective for the full spectrum. Individuals on the autism spectrum with intellectual disability and/or minimal language are generally neglected in research and it is important to consider how their views can be gathered and how they can be brought into participatory research models (Chakrabarti 2017 ).

In some of the discussions, there were an equal number of researchers to participants or occasionally more researchers than participants. It is possible that this dynamic influenced the participants’ responses, however no evidence of this was found in the data.

Finally, while gender differences were a topic examined in these discussions, a comparison male autism group was not included and would be useful in future studies.

Implications & Future Directions

The discussions highlighted important themes, including both negative and positive factors that contribute to the experiences of autistic females. We believe this research has several potential implications.

First, the negative accounts of getting an autism diagnosis emphasise the need to adapt diagnostic processes to be more inclusive for females and their families. Future guidelines could include information for clinicians to aid understanding of barriers to diagnosis for females, such as the misconception that autism is a solely male diagnosis.

Topics for future research have been identified: one suggestion is to explore whether camouflaging behaviours are adopted by individuals with a diagnosis other than autism or no diagnoses at all, and whether there is a gender disparity in camouflaging behaviours within these populations.

Finally, for autistic females, having the opportunity to share their experiences and perspectives contribute towards viewing autism with a gender balanced lens, rather than the current male focus. It’s hoped that a greater understanding of female autism will allow autistic individuals to receive better recognition and understanding, and thus have a more positive experience.

By capturing qualitative accounts of the female experiences of autism, we hope to contribute to a greater understanding of the obstacles and challenges faced by women and girls at various stages of having an autism diagnosis. We have also reported several positive aspects of autism, which are often underreported in the literature. We hope that the information gathered, and the small glimpse into the lives of autistic females, can influence future research and clinical practice, and has given autistic females the opportunity to share their too-often ignored voices.

Electronic Supplementary Material

Below is the link to the electronic supplementary material.

Acknowledgments

We would like to thank all of the women, girls and families who took part in our project. We would like to thank Clara Martins de Barros for her consultation on early drafts of the paper, and her invaluable insights as an autistic female. FH is part funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London.

Author Contributions

FH and EC conceived the study as part of a grant on which they are the principal investigators. VM, HM, EC, and FH planned the study. VM, HM, and EC conducted the interviews and discussion groups. VM, HM, and EC analysed the data and conducted thematic analysis. All authors discussed interpretation of the data. VM and HM wrote the first draft of the manuscript, and all authors contributed to revision and response to reviews. All authors read and approved the final manuscript.

This study was funded by the Economic and Social Research Council (grant number: ES/M011488/1).

Compliance with Ethical Standards

The authors declare that they have no conflict of interest.

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval for this project was obtained by the Psychiatry, Nursing and Midwifery (PNM) Research Ethics Subcommittee (RESC).

Informed consent was obtained from all individual participants included in the study.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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A systematic review of the thesis on language and communication skills of individuals with autism spectrum disorder

This study is a content analysis study in which thesis indexed in YÖK National Thesis Center of Turkey about teaching language and communication skills in autism spectrum disorder are examined in terms of various variables. For this purpose, 17 open-access theses were obtained based on an extensive search and examined. The results of the research were arranged according to sub-problems and presented in descriptive form as frequency and percentage tables. This study aims to determine the current trends in the postgraduate thesis written on teaching language and communication skills to individuals with ASD between the years of 2014 and 2019. The postgraduate thesis were analyzed based on previously determined content analysis criteria including year of publication, thesis level, title of thesis supervisor, university, institute, department, research method, participants, number of native and foreign references, location and research subject. When the needs of families with children with autism spectrum disorder or at risk are considered in our country, it is clearly seen how much work is needed and how important these studies are. Supporting teaching practices that take into account the individual differences of individuals with autism, conducting new researches and comparing the results, will develop new perspectives and contribute to the literature.

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Improving Student Attitudes Toward Autistic Individuals: A Systematic Review

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• Published: 24 August 2023

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• Elise Settanni   ORCID: orcid.org/0000-0002-5331-3006 1 ,
• Lee Kern   ORCID: orcid.org/0000-0003-4071-7826 1 &
• Alyssa M. Blasko   ORCID: orcid.org/0000-0002-9799-3656 1  

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There is an increasing number of autistic students being educated alongside their neurotypical peers. However, placing a student in the general education setting is not sufficient for meaningful inclusion. Historically, autistic students have had fewer friendships, been less accepted, and experienced stigmatization. Interventions to increase peer attitudes toward autism have emerged as a method for creating more inclusive environments. The purpose of this literature review was to describe the interventions to improve peer attitudes toward autism, review the quality of the research, and determine the effectiveness of interventions. Specifically, this review aimed to answer the following questions: (1) what are participant characteristics and components of interventions designed to improve attitudes toward autistic individuals? (2) What is the methodological quality of interventions designed to improve attitudes toward autistic individuals, as measured by Council for Exceptional Children standards for evidence-based practices in special education (2014) criteria? (3) What is the effectiveness of interventions to improve attitudes toward autistic individuals? A total of 13 studies were located through a systematic search. Included studies were coded for study characteristics, participant characteristics, intervention, and outcomes. Across the studies, there were a total of 2097 participants. All studies included contact (either direct, indirect, or peer-mediation) and most included an education component ( k  = 10). Findings indicated that interventions are effective at improving attitudes toward autism, but further research is required to determine their overall impact.

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Settanni, E., Kern, L. & Blasko, A.M. Improving Student Attitudes Toward Autistic Individuals: A Systematic Review. J Autism Dev Disord (2023). https://doi.org/10.1007/s10803-023-06082-8

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Home » Blog » Dissertation » Topics » Autism » Autism Dissertation Topics (27 Examples) For Your Academic Research

Autism Dissertation Topics (27 Examples) For Your Academic Research

Mark May 9, 2020 Jun 5, 2020 Autism No Comments

Autism is a complex developmental disorder. As many children are diagnosed with having autism, it has become a topic of interest for researchers. It is an interesting and sensitive issue, which has caught a lot of attention in the past few years. A list of autism dissertation topics is presented below, which can help you […]

Autism is a complex developmental disorder. As many children are diagnosed with having autism, it has become a topic of interest for researchers. It is an interesting and sensitive issue, which has caught a lot of attention in the past few years. A list of autism dissertation topics is presented below, which can help you in deciding on the topic for your dissertation and project.

We would suggest choosing a research topic on autism or a project topic on autism that you find interesting. We have narrowed down a list of few autism dissertation topics. You can select any topic from the autism dissertation topics list to carry out your academic research.

List of autism dissertation topic

A review of who is suffering more, a child with autism or the child’s family?

The silent treatment and the scrutiny that a person with autism goes through – an explorative analysis.

A literature review of the best and worst stereotypes that can destroy the life of an autistic person.

Studying the legalisation of the experimental drugs that can help people suffering from autism.

Exploring approaches to support young people with an autism spectrum disorder.

To examine the diagnostic tests for autism spectrum disorder in preschool children.

An analysis of transitioning to adult life for the people with Autism Spectrum Disorder.

A review of the neurobehavioral characteristics of children with autism disorder.

Evidence of the rates of autism in studies of gender diverse individuals.

Exploring the relationship between body perception and autistic behaviour.

Strategies to help parents in coping with children with an autism spectrum disorder.

Estimating the prevalence of autism spectrum disorder in the UK population.

A study of the animal-assisted interventions for children with autism spectrum disorders.

Identifying, assessing, analysing, and diagnosing autism spectrum disorder in adults.

Examining the knowledge and attitude of families and health care providers towards autism.

What is autism spectrum disorder? – A literature review.

Studying the non-verbal communication skills of children with an autism spectrum disorder.

The importance of an educator’s knowledge and beliefs about teaching children with autism.

Comparing the perspectives of autistic adults, parents and professionals related to autism diagnosis in the UK.

Studying the lived experiences of mothers of children with autism spectrum disorders.

Strategies to encourage parents to get their child screened for autism.

Exploring the fun and innovative ways to work with autistic children.

The importance of treating autism with drug medications.

Identifying the methods to encourage autistic children to interact with other children.

Analysing the advancements in the effective screening of autism.

To study the approaches for meeting the learning needs of children with an autism spectrum disorder in elementary education.

Exploring the child-centred play therapy to deal with young children with autism.

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Chawarska & colleagues recognized for contribution to puppetry literature

2024 staub award for excellence in writing, bestowed on world puppetry day.

• Nancy Staub Publications Award

On March 21, 2024, celebrated as World Puppetry Day, Yale Child Study Center (YCSC) Professor Kasia Chawarska along with Senior Research Scientist Suzanne Macari and colleagues received the 2024 Nancy Staub Publications Award for excellence in writing on the art of puppetry.

The Nancy Staub Award is given by the United States Center of Union Internationale de la Marionnette (UNIMA-USA), the North American Center of the oldest international theatre organization in the world. This is one of the first puppetry awards given for a scientific paper involving clinical child populations.

Macari was notified in February that a paper she and Chawarska co-authored, Puppets facilitate attention to social cues in children with ASD , was selected for the award, which is named in honor of Nancy Lohman Staub, an original member of UNIMA-USA.

Published in Autism Research in 2021, the article was written about a research study led by Chawarska and made possible by a collaboration conceived by Chawarska with Fred Volkmar, Irving B. Harris Professor Emeritus, and Cheryl Henson of the Henson Foundation.

As noted in the award letter, “The award is meant to honor books, articles, or dissertations which are exemplary contributions that forward the field of puppetry by documenting important histories, contributing importantly to theory or practice, and by sharing prime research. Our award committee found your work a significant addition to the literature on puppetry and performing objects.”

The paper’s authors also include YCSC Associate Research Scientist Angelina Vernetti and Joseph Chang, James A. Attwood Professor of Statistics & Data Science at Yale, as well as several Yale students and members of the YCSC Social and Affective Neuroscience of Autism (SANA) lab.

Featured in this article

• Katarzyna Chawarska, PhD Emily Fraser Beede Professor of Child Psychiatry; Director, Social and Affective Neuroscience of Autism Program, Child Study Center; Director, Yale Toddler Developmental Disabilities Clinic
• Suzanne Macari, PhD Senior Research Scientist in the Child Study Center; Co-director, Yale Social and Affective Neuroscience of Autism Program, Child Study Center
• Angelina Vernetti, PhD Research Scientist in the Child Study Center
• Fred Volkmar, MD Irving B. Harris Professor Emeritus in the Child Study Center
• Joseph Chang James A. Attwood Professor of Statistics and Data Science

Related Links

• World Puppetry Day
• Social and Affective Neuroscience of Autism (SANA) Program Website

Autism Impact Fund closes $60M first fund and broadens its scope

Millions of people around the world are affected by autism spectrum disorder (ASD). Both as kids and later in life, these individuals and their families need better detection, treatment and support solutions that will help them live with autism. But until recently, that wasn’t a space that startups and investors ventured into.

Autism Impact Fund (AIF) was a pioneer when it emerged in 2021, three years after the son of its co-founder and managing partner, Chris Male, was diagnosed with ASD. A joint effort of Male and others, AIF strove to become “the investment and innovation arm of the autism community,” Male told TechCrunch.

Since then, startups in the neurodiversity space gathered momentum, and so did AIF, which recently closed its first fund at $60 million. As a first-of-its-kind fund, exceeding its target is no small feat, especially in an incredibly difficult environment. (The original target was $50 million.)

New venture fund aims to become the ‘investment and innovation arm’ of the autism community

AIF is a VC fund, not a charity, and Male is also vocal about it. “We’ve got great collaborations with the nonprofits, with the foundations, and we are very intentional in our regard to drive returns. … We aim to deliver really strong returns while revolutionizing the status quo for autism and everything in the space through the venture capital model.”

AIF’s limited partners include Uber CEO Dara Khosrowshahi; Brian Jacobs from Emergence Capital Partners; and Bob Nelsen, a co-founder and managing director of Arch Venture Partners, who also sit on its advisory board. Male didn’t want to tell their personal stories for them, but AIF’s individual backers often have personal connections to autism.

However, institutional LPs such as investment firms Fairfield-Maxwell and Ferd also support AIF, “which obviously was very helpful to get us to that scale,” Male said. It is also one more sign of change. “The operators that are entering the space are no longer just family members wanting to help; it’s really sophisticated business operators that are seeing an opportunity to affect wholesale change, and it’s really cool.”

A broad portfolio

Some VC funds wait for a full close to start deploying capital, but not AIF. Because it needed to prove itself and its thesis, it started investing since its first close. With 12 startups in its portfolio, it will start raising its second fund in the next six to nine months, and Male already reports inbound interest.

That companies in AIF’s portfolio raised follow-on rounds from other investors is a strong validation signal. For instance, CVS Health Ventures led a $40 million Series D extension round of investment into healthcare startup Cortica in October. Other signals are harder to measure but are still important. Male told TechCrunch that AIF has strong access even to oversubscribed deals, and even when its check is not the largest, there’s a sense that it’s “a stamp of approval to the market and to the community that this is a validated, well-run entity.”

AIF still has resources in its first fund to do a “handful” more deals as well as follow-on investments. After several “strong bets,” its portfolio is giving it motive to double down. And, Male added, “there is a very high likelihood of us having exits within the next six months; so, soon, because we [starting deploying] in 2021.”

AIF’s portfolio is already quite diverse, although its website groups companies in two categories: life sciences and data- and tech-enabled services. It also goes beyond the U.S. with Germany-based consulting firm Auticon , which describes itself as an “autism-majority company,” and British telehealth platform Healios . But it will now diversify it further, and not because there isn’t enough deal flow or issues to address with autism alone.

AIF’s decision to broaden its scope has to do with autism itself, Male said.

The definition of autism is so vague and so broad that there’s really no [biologically precise] understanding of exactly what’s happening, so in order for us to help the individuals as well as the families, we have to broaden that aperture. And it’s behavioral and mental health, it’s all of those but it’s also a broader healthcare issue at lens. The societal cost is in the trillions of dollars right now, and if the rise of incidence increases at the rate it is, it’s $15 trillion societal costs. Lack of employment and being [un]able to work is factored into that. But it’s as if society is sleepwalking into this incredible crisis, for which there is no current plan.

Rising awareness

The fund will now allow itself to invest in “behavioral health data-driven platforms, innovative healthcare solutions, as well as value-based care frameworks,” and AI is “impossible to ignore,” Male said. It will also keep on investing in addressing autism comorbidities, for instance gastrointestinal issues. And then there’s the “independence bucket,” whether that’s employment, financial independence or housing.

That independence is on the list is a reminder that autism is a spectrum that needs to be addressed as such and that there is a business opportunity for startups that don’t solely focus on kids.

One startup focusing on adults, neurodiversity employment network Mentra, is backed by Sam Altman and others but not by AIF. No beef there: Mentra partnered with AIF-backed Auticon, and Male called the work they are doing “incredible.”

It’s arguably a good sign that AIF isn’t one of Mentra’s investors: The space is getting too big to find the same VC on all cap tables. It’s also global, with health tech Genial Care raising $10 million to help kids with autism and their families in Brazil.

When asked if there wasn’t some momentum about company creation in this space recently, Male laughed. Compared to five years ago, he explained, “it’s just fun to see the momentum and the shift.” As the investment side gets busier, too, there will likely be more to come.

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She Lied, Cheated and Stole. Then She Wrote a Book About It.

In her buzzy memoir, “Sociopath,” Patric Gagne shows herself more committed to revel in her naughtiness than to demystify the condition.

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By Alexandra Jacobs

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SOCIOPATH: A Memoir, by Patric Gagne

That Patric Gagne is a sociopath isn’t news. She wrote about it for The New York Times’s Modern Love column, which led to a deal for a book that I have just hurled across the room like a discus, and an extensive pre-publication interview with my colleague David Marchese.

Gagne seems also to be afflicted, or blessed, with hyperthymesia, a.k.a highly superior autobiographical memory : a rare condition publicized in an old “ 60 Minutes” segment featuring the actress Marilu Henner.

How else, unless Gagne was concealing a small tape recorder on her person since childhood (not out of the question, of course, for a sociopath) does she recall decades-old dialogue in such precise detail? And incidentally, how come so much of that is rat-a-tat banter suitable for a corny ’90s rom-com?

“I’d kill myself if everywhere I went, people knew who I was,” Gagne, who in young adulthood follows her father into the music business, tells a flirtatious rock guitarist to whom she’s confided her sociopathy.

“Instead of killing other people, you mean?” he replies.

The ostensible goal of “Sociopath,” as the memoir is titled in dramatic Sharpie letters on the cover, is to address exactly this sort of misconception, to destigmatize an oft-misunderstood personality type. Most of Gagne’s kind are not murderers. She argues that sociopathy is a spectrum disorder, like autism, affecting “millions,” though there’s no source for this number; citation in “Sociopath” is not footnotes but excited “flipping” through library books.

Other than stabbing a “neighborhood terror” in the head with a pencil when she was in second grade, flinging a glass pitcher at a wall and occasionally clawing herself in frustration to the point of bleeding, Gagne has tended to be more creepy than violent in her transgressive behavior. Relief from a certain temperamental blankness has come, she writes, by breaking into other people’s homes and joyriding in their dubiously borrowed cars.

“The silence of a structure that has just been broken into is unlike any other,” the author writes, adding with unnerving humanization, “It’s almost like the house can’t believe what just happened and has gasped, taking all the air with it.”

Gagne tells of stealing and stockpiling trivial objects, like a pair of Ringo Starr’s glasses when she was a toddler, and as an adult a Statue of Liberty key chain that she used to signal to her watchful then-boyfriend, David, when she’d done something “unorthodox.” (David, no saint, also joined her for sex in the empty houses.) Gagne mulled filching a life-size ceramic tiger from Hugh Hefner’s office during a party at the Playboy Mansion, but settled for a notepad.

Some people crash weddings for the free food and drinks; she sneaks into funerals, strangers’ grief washing over her like a spa cleanse. There’s an elaborate subplot about Gagne stalking a woman named Ginny who’s trying to extort her father, the revelation that causes the obviously enchanted guitarist to do a “spit take.” (Spit takes being about as common in real life as rimshots.)

Indeed a large swath of “Sociopath” is devoted to Gagne’s ability to succeed amid the “dark magic” of the music business, which, we’re reminded, tends to attract difficult personalities such as that guitarist (she dubs him Max Magus), for whom she may or may not be leaving dependable David.

You’ve heard the phrase “has no chill.” Gagne portrays herself as all c hill: a “blond, ferret-toting Wednesday Addams,” as she writes of an upbringing stressed by divorce and a move to Florida.

Her younger sister, Harlowe, nicknames her Captain Apathy, drawing a cartoon of a masked superhero. (Somebody dial Mattel!) Like Diana in “A Chorus Line,” Patric feels nothing — happiness and anger in brief spurts, maybe, but not empathy or remorse, a syndrome she likens to bad eyesight.

She does, however, curse an awful lot, sometimes in ALL CAPS. One woman is dismissed as a “basic bitch” and worse. Repetition and weather reports (“the breeze whistled its approval as I approached the sports car”) blight the narrative. And when Gagne, now a clinical psychologist and married mother of two, writes of her longing for incarceration (“a short stint in lockup sounded interesting”), one wishes someone had gently placed a few more studies on her library pile.

Sociopathy is no longer indexed in the Diagnostic and Statistical Manual of Mental Disorders, Gagne writes, replaced by antisocial personality disorder, several criteria of which don’t resonate with her. She guards her medical identity like a ceramic tiger, scornfully labeling a messy record-label executive named Jennifer a “fauxciopath.”(A term the author is attempting to trademark .)

I have little problem with “Sociopath” as a porthole into the unusual mind of one woman — albeit a smudged porthole; she admits to changing names, dates and details. It’s when Gagne swerves the wheel of that purloined auto into the scholarly realm, speeding through the psychiatrist Hervey Cleckley’s 1941 seminal work on psychopathy, “The Mask of Sanity,” and topics like cognitive behavioral therapy, that sweat begins to bead on my boringly neurotypical forehead.

Those Sharpie letters proclaim a Ph.D. in clinical psychology , but since her dissertation is not available online, nor referenced by other scholars, “Sociopath” is venturing out into the hot media lights uncomfortably alone. This is an important topic, treated too flightily: begging for peer review, not book review.

SOCIOPATH : A Memoir | By Patric Gagne | Simon & Schuster | 368 pp. | $28.99

Alexandra Jacobs is a Times book critic and occasional features writer. She joined The Times in 2010. More about Alexandra Jacobs

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This Main Street Billionaire Bought Over A Thousand Small Businesses—And Never Lost A Dime

Justin ishbia may not be as well known (or as rich) as his younger brother mat. but with a $7 billion portfolio of veterinary clinics, autism treatment centers and bakeries, he’s made a fortune for himself and his investors., by matt durot and amy feldman , forbes staff.

“I talk fast,” says Justin Ishbia with a smile during a recent tour of Shore Capi­tal Partners, his Chicago-based private equity firm. Wearing Nikes with a blazer and jeans, the 46-year-old billionaire moves fast, too, racing through a jam-packed schedule—courtside seats at the Bulls game the night before with his younger brother, Mat, the Phoenix Suns’ controlling owner and also a billionaire; a quick catered lunch with Forbes and four of his top lieutenants followed by a portfolio company board meeting; then a private flight to Oregon to watch U of O’s football team play USC with his law school buddies. He answers texts and emails within minutes, regardless of the hour. “I don’t sleep very much,” he says.

Shore Capital moves just as quickly as its founder. The health care–focused microcap investment firm sealed 801 deals from 2020 to 2023, making it one of the world’s busiest buyout shops. Its assets under management soared sevenfold to $7 billion during that period, as stellar returns convinced early investors like the University of Notre Dame and Sequoia Capi­tal’s wealth management arm to steadily boost their commitments. But with its 15th anniversary this year, Shore remains a minnow in the ocean of private equity—where the largest fish, such as Apollo, Blackstone and KKR, oversee more than $500 billion apiece. That’s by design. “We’ve turned away billions of dollars,” Ishbia says. “In private equity, when you’re good at your job, you raise a bigger fund. My thesis was, ‘Who stays in microcap?’ The answer is basically nobody.”

S TAYING SMALL is working out big time: Shore’s average internal rate of return on its 14 exits, all in health care, is 53%, net of fees. That’s nearly triple the average net IRR of U.S. buyout funds raised since 2009, according to data from Cambridge Associates. After Shore took its 20% to 30% cut of profits, its exits multiplied investors’ money by 5.5 times on average, also nearly triple the average total value to paid-in capital multiple of U.S. buyout funds raised during that period. Shore has never unloaded a company for less than three times cost before fees, nor, it says, has it ever suffered a loss. “Those are top 1% returns in private equity,” marvels one investor who asked not to be identified, citing his organization’s press policy. “That’s rarefied air, right? That’s more like venture capital than a traditional buyout firm.”

Shore Capital's Justin Ishbia: "We're investing in Main Street, not Wall Street."

Ishbia and his team have acquired more than 1,000 mom-and-pop shops across the country (average cost: $15 million) since Shore’s 2009 founding and rolled them up into 61 larger chains of things inclu­ding autism treatment clinics, bakeries and exterminators. “We’re buying businesses in Akron, Ohio, and Pittsburgh, and Birmingham, Alabama,” Ishbia says. “There’s more low-hanging fruit for me. It’s Joe Schmo on Main Street.”

Shore then invests in computer systems and equipment, stacks the businesses’ boards with industry veterans and hunts for complementary companies in adjacent markets. “We’re just buying and buying and buying,” says Ishbia, who insists Shore doesn’t take on as much debt as other private equity firms and doesn’t cut servi­ces or head count. “The private equity world gets a bad rap for ‘buy this, slash that.’ We are growth—we have almost 35,000 employees and hire thousands per year.”

Even with all his success, Ishbia doesn’t get the same attention as Mat, his younger, richer brother, who is CEO of the nation’s largest home lender, United Wholesale Mortgage (UWM). But Shore’s portfolio companies employ five times as many people and have arguably had a similar impact on America’s economy, helping build up small businesses nationwide. While critics say private equity hurts consumers by redu­cing competition and quality and raising prices, Ishbia dismisses the idea. “It’s not like there’s just one PE-owned company in veterinary or dental or urgent care.”

He first learned about private equity as a teenager from his best friend’s father, who worked in the industry. “I just knew my buddy had a big house,” he recalls. “At the end of the summer, I asked him, ‘How do I pursue that career?’ ”

After college at Michigan State and law school at Vanderbilt, Ishbia did stints at a Chicago law firm and private equity shop. His father, who founded UWM’s predecessor in 1986, pitched him hard on coming to work with him in 2009. Mat had joined six years earlier. “I love Mat . . . but we’re both alphas,” Ishbia says. “I said, ‘Dad, if Mat and I work together every day, we’re going to end up fighting all the time, and that won’t be good for either of us.’ My dream was to start my own thing.” That same year, at age 31, he founded Shore with buddies Ryan Kelley, John Hennegan and Mike Cooper.

The economy was in recession, and it might not have seemed the best time to start something new. But Ishbia trusted his friend’s father, who told him a difficult time to raise capital is a good time to invest. To build a track record, he raised $10 million for his first deal from his father, his brother, his friend’s dad and other individuals, mostly partners in private equity and law firms. “We were young, and we knew no one would give us money to buy 10 companies, but they might give us money to buy one,” Kelley says. “Justin was like, ‘Let’s just prove we can actually buy these companies, add value and sell ’em.’ ” He did that. Four more times. In each instance, Shore raised between $5 million and $15 million to buy one business, then sold it at a profit. By 2014, the cofounders were ready to expand and raised $113 million for their first institutional fund.

T HAT WAS AROUND the time veterinarian Jay Price first heard of Justin Ishbia. Price was running three Alabama clinics when a college friend called with a proposition: Talk to my law school friend, who owns a private equity firm and is looking to buy. “I didn’t really know what private equity was,” Price says. “I was like, ‘You guys can come down, but I’m not really interested.’ ” At the time, the veterinary industry—traditionally fragmented and dominated by small-scale operations—was starting to consolidate. Not long after the meeting, Price read about how National Veterinary Associates was selling to private equity giant Ares Management, and he agreed to sell a majority stake in his outfit, Southern Veterinary Partners, to Shore in a $6 million (enterprise value) deal.

Today, Southern Vet competes not only with National Veterinary Associates (now owned by JAB) but with VCA (owned by candy maker Mars) and Oak Hill Capital–backed VetCor in the lucrative market of taking care of America’s pets. Price is CEO and runs an operation with more than 400 locations and $1.3 billion in annual revenue. That makes Southern Vet one of Shore’s most successful acquisitions. Though Price no longer has time to practice, he still personally oversees the health of Ishbia’s two yellow Labrador retrie­vers remotely.

Another success is BrightView, a chain of addiction treatment centers. The Cincinnati-based company was founded in 2015 by Chad Smith, an attorney; Shawn Ryan, an ER doc who had seen too many patients caught up in the nation’s opioid epidemic; and a third cofounder who has since left. Smith, who is CEO, discovered Shore a year later through a business broker when the operation had two locations. “In outpatient health care services, it takes a decent amount of capital to get off the ground. Try explaining to your spouse what ‘personal guarantees’ mean on loans that exceed all your assets,” he says.

He first spoke with Ishbia and his team at 5 a.m. one Saturday while vacationing in Austin, Texas, and sold a majority stake to Shore the next year in a $20 million (enterprise value) deal. To celebrate, Ishbia threw a deep-dish pizza party. “When Justin came out, eating a meat-only pizza and wearing a hoodie, it gave the team a sense of calm: The Shore folks “are normal people, and it’s going to be fine,” Smith recalls. Shore figures BrightView, now with over $200 million in annual revenue from 80-plus locations, is worth more than $450 million.

The CEOs of 11 of Shore’s portfolio companies shared similar stories. The firm starts by spending hundreds of thousands (or millions) upfront, getting the house in order. That causes an initial decline in profitability. But the dip is quickly offset as they begin to buy competitors and expand rapidly. “People think a veterinary rollup is different than a rollup in the bakery space. I say it’s the same,” Ishbia says. Concurring is Boris Groysberg, a Harvard Business School professor who is writing a case study on Shore, noting that it has done exceptionally well putting in place repeatable processes that it can use to scale up quickly. “They are very systematic, which is so unusual for their type of firm,” says Groysberg, who has consulted for Shore. “It’s a group of people that’s like the special forces. They come in, and they do exactly what needs to be done.”

S OME THINK THE private equity party is over and won’t be so much fun going forward. Ishbia argues that many of Shore’s businesses are recession-resistant, because people will get cataract surgery and care for their sick dogs regardless of the economy. Plus, Shore’s relatively modest use of debt has somewhat insulated it from higher interest rates. “The world corrected on price, and I think businesses are worth 10% to 20% less than they were in April 2022,” Ishbia says. But as he learned when he started the business, a downturn is a good time to invest. “I’m a buyer right now,” he says. “And some people say that’s crazy.”

He can afford to be crazy. Forbes estimates that just two-fifths of Ishbia’s $5.1 billion net worth, or roughly $2 billion, is from Shore. Most of the rest comes from his 22% stake in UWM, on whose board he sits, and 13% stake in the NBA’s Suns, both controlled by his brother. (After publication of this story in the print edition of April/May 2024, a report was published claiming that UWM pressured brokers to steer deals its way, costing borrowers heavily. UWM responded that the report was “riddled with inaccuracies and incorrect information.” The stock is down 4% from the beginning of that day.)

Ishbia’s understanding of entrepreneurs began with his father, Jeff, whose own father, a Turkish immigrant, died when Jeff was a teen. To help out, he bought ice cream bikes and rented them to other kids. The first in his family to go to college, Jeff bought ice cream trucks, restaurants, apartment buildings, hotels, a potato chip maker and an alarm company—all while maintaining a law practice in the Detroit suburb of Birmingham. In 1986, when Justin was 8 and Mat 6, Jeff founded Shore Mortgage, UWM’s predecessor. “We grew up very comfortable, but we weren’t wealthy by any means,” Justin recalls.

Justin Ishbia (left) at age 4, with his younger brother, Mat, in their preschool class photo in Southfield, Michigan. “We’d pretend to be stars and pretend to be the guy taking the shot at the buzzer,” Justin says.

The family was tight-knit, and the brothers were best friends but also highly competitive. When they weren’t playing one-on-one and pretending to be NBA legends Magic Johnson and Isiah Thomas (the latter is now a UWM director), they were wrangling over the Sega Genesis. “If I was winning with a few seconds left, Mat would just turn off the console so the game wouldn’t count toward the standings,” Ishbia says. “We were both guilty of that.” Inspired by Detroit’s Pistons, Tigers and Red Wings, who won five championships combined during the ’80s and ’90s, the brothers took athletics seriously, encouraging each other in their sports. Justin was into baseball; Mat excelled in basketball. “We’d push each other to get better,” Mat recalls. “I think extreme competitiveness, which we both have, has driven our work ethic.”

While Justin’s sporting career ended when he went to Michigan State, Mat—who followed him to East Lansing—joined the university’s basketball team and became a popular benchwarmer. The brothers roomed together, but Mat became a campus celebrity after the team won the NCAA championship in 2000, his freshman year. “[Justin] used to always joke that his first couple of years on campus, he was Justin Ishbia,” says Shore cofounder Hennegan. And then he was Mat’s brother. “I think that stuck with him.”

Adds Kelley with a laugh, “His little brother’s got three times his net worth or whatever it is. So yeah, I think there’s part of that driving Justin.” (The discrepancy is actually closer to two times.)

Justin Ishbia (right) and his younger brother Mat: The two, who own the Phoenix Suns together, are very close — and extremely competitive.

The sibling rivalry seemingly never ends. Both brothers are currently building over-the-top trophy homes. In Winnetka, Illinois, Justin is building a megamansion that will reportedly have a price tag of nearly $80 million (an area record) and have both indoor and outdoor pools. “It looks like a bomb got dropped on Lake Michigan,” says future neighbor Kelley of the construction. Not to be outdone, Mat’s home in Bloomfield Township, Michigan, will boast a trampoline park, an enchanted forest and a lazy river.

Justin insists he couldn’t be prouder of his younger brother. His office across the Chicago River from Trump Tower is cluttered with family photos and sports memorabilia: a Phoenix Suns jersey, a photo of Mat and Jeff ringing the NYSE’s opening bell when UWM went public in 2021 and a poster of Mat’s Michi­gan State national championship team.

But maybe there is a more important trophy. Just outside his office is the “Shore Cup.” Inspired by the NHL’s Stanley Cup and produced by the same manufacturer, the massive silver goblet is engraved with the names of all Shore’s portfolio companies. In the early days, Ishbia and his team would take it out on the town. “They’d fill the thing up with champagne,” says Shore chairman Jim Forrest, “and go bar to bar to bar to bar to bar to bar drinking out of the Shore Cup.”

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