High Functioning Autism in Females – Addressing the level of misdiagnosis reported by parents of daughters with Asperger’s Syndrome – High Functioning Autism

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Figures derived from a national survey on the experiences of parents with young adults on the Autism Spectrum conducted in Australia last year indicate that out of the 203 parents who responded to the survey only 44 reported having daughters diagnosed as being on the Autism Spectrum.

30 of who were diagnosed specifically with having Asperger’s Disorder / Asperger’s Syndrome.

This stands in stark contrast to the 152 parents who reported having sons diagnosed on the Spectrum.

For this reason the information provided by parents with daughters on the Autism Spectrum is considered to offer a previously unexamined snap shot of the previously unrecognized  parental experiences that are  unique to parents of daughters on the Autism Spectrum.

Mothers of daughters within this survey reported that they had to struggle with professionals who were either unaware, ill-equipped or in some instances entirely unprepared to diagnose girls with High Functioning Autism/ Asperger’s Syndrome, Asperger’s Disorder.

As a result many mothers, such as a mother whose daughter wasn’t diagnosed with Asperger’s Disorder until the age of 44, reported having their children regularly misdiagnosed over the course of several years due to inappropriate professional biases towards them as mother’s and a clear lack of understanding as how Autism presents within girls.

The rates of diagnosis and age at diagnosis for girls with Asperger’s Disorder/ Asperger’s Syndrome or High Functioning Autism are further reflected in the statistical data.

Parent Gender

Year of Birth Diagnosis Age at Diagnosis
Mother 1989 Asperger’s Disorder 12
Father 1981 Asperger’s Disorder 26
Father 1986 Asperger’s Disorder 12
Mother 1991 Asperger’s Disorder 19
Mother 1986 Asperger’s Disorder 14
Mother 1988 Asperger’s Disorder 12
Mother 1984 Asperger’s Disorder 13
Mother 1975 Asperger’s Disorder 20
Mother 1995 Asperger’s Disorder 7
Mother 1991 Asperger’s Disorder 13
Mother 1992 Asperger’s Disorder 15
Mother 1988 Asperger’s Disorder 20
Mother 1964 Asperger’s Disorder 44
Mother 1992 Asperger’s Disorder 16
Mother No Record Asperger’s Disorder 26
Mother 1978 Asperger’s Disorder 20

Mother

No Record Asperger’s Disorder 7
Mother 1985 Asperger’s Disorder 10
Mother 1975 Asperger’s Disorder 26
Mother 1998 Asperger’s Disorder 12
Mother 1983 Asperger’s Disorder 18
Mother 1972 Asperger’s Disorder 26
Mother 1989 Asperger’s Disorder 12
Mother 1992 Asperger’s Disorder 18
Mother 1989 Asperger’s Disorder 13
Mother 1986 Asperger’s Disorder 9
Mother 1992 Asperger’s Disorder 14
Mother 1984 Asperger’s Disorder 9
Mother No Record Asperger’s Disorder 7
Mother 1987 Asperger’s Disorder 15

The youngest age at which girls identified as having an Asperger’s Disorder were reported being diagnosed within this survey was that of 7 years, at which only 3 girls, were identified.

2 girls were reported as receiving their diagnosis between the age of 9 and 10 years.

8 girls with Asperger’s Disorder were reported as receiving their diagnosis between the ages of 12 and 13 years.

11 girls were reported as receiving their diagnosis between the ages of 14 and 20 years.

7 females were recorded as receiving their diagnosis after the age of 21.

This indicates that the most likely age range for girls with an Asperger’s Disorder or Asperger’s Syndrome to be diagnosed is between that of 14 and 20 years.

The oldest reported age of diagnosis for a female with Asperger’s Disorder by a mother within this survey is recorded as being at 44 years.

Her mother reports that her daughter’s diagnosis process was “slow” and “frustrating” and states that:

“We eventually found a practitioner who knew about autism but it took decades to find someone.”  In the meantime this mother reports being filled with:  “FRUSTRATION and crying out for real help.”

This expressed sense of frustration is echoed time and time again by mothers with daughters on the spectrum and further indicates that there may well be several issues of gender at play within the realms of diagnosis.

Comments from mother’s within this survey indicate that not only does the gender of the child/young adult being assessed for  an Autism Spectrum Disorder play a major role in the levels of diagnosis occurring but also the gender of the parent engaging within that diagnostic process.

This is further highlighted by the fact that although mothers of children within this study reported having an initial understanding that their children (both male and female) had different ways of responding to the world, often their attempts to understand those differences resulted in negative and personally harmful parental experiences with doctors.

Several mothers described having their concerns “invalidated” through having their parenting and psychological capacities questioned.

These are the words used by mother’s themselves to describe their experiences with the diagnostic process;

“I was actively invalidated in my concerns”.

No one would listen and called me neurotic”.

“No help at any stage – considerable negativity + Put downs (of me)”.

Mother of daughter with Asperger’s not diagnosed until late teens.

“As a mother, I still carry all the emotional scars of the assault on my parenting.”

“Pediatrician refused to diagnose her as he felt she was not on the spectrum.”  

“I knew she had something all along but I couldn’t get a doctor to help.”

Mother of a daughter with Asperger’s not diagnosed until 12.

“Professionals did not have training to recognise ASD in intelligent person”.

Mother of daughter with Asperger’s Disorder.

 “Diagnosis from 7 years old was ADD inattentive, anxiety, transient tic, depression.”

Mother of daughter with Asperger’s not diagnosed until the age of 18.

“Took from age 2 to 11 years to receive diagnosis.”  

“No one was prepared to help from when K was young (neurotic mother) “.

“5 years of medical mis-advise misdiagnosis, misunderstanding, full of angst.”

“Many incorrect diagnosis/parental blame/lack of support”.

“We had idea about ASD, diagnosed with ADD at 4 years.”

Mother of young adult not diagnosed until 22 yrs.

“Long process, complicated (by system/practitioners)”.

However, only one father within this study reported having any such experiences.

Mothers therefore describe having to engage with a lack of understanding and support that often began with their initial attempts to have their child’s needs recognised through a medical diagnosis.

Such parental experiences indicate that the tendency of medical professionals to ignore or misplace parental concerns, particularly the concerns of mothers, as reported by Phillip and Duckworth (1980) and explored in the works of Green (2005) and Ryan and Runswick-Cole (2007) are still occurring.

As Green (2005) and Ryan and Runswick-Cole (2007) argue, the medical mis-recognition of maternal concerns emphasises their precarious and powerless position which arises as a consequence of the unequal balance of power that is created through the elevation of medical opinion above the legitimate recognition of parental expertise.

Parents indicate that as a consequence of not having their concerns legitimately recognized or understood, their children’s needs were also negated. This is further reflected within the trends found within data derived from females on the autism spectrum.

Significance of female data

The significance of a lack of diagnosis occurring for girls with Asperger’s Disorder before the age of 7  and with the majority of diagnosis taking place between the ages of 14 -20 years for females, signals the possibility that medical professional may still yet remain either unwilling or unable to sufficiently detect the signs of Asperger’s Disorders / Asperger’s Syndrome in girls.

Maternal experiences of misdiagnosis, invalidation and their overall lack of recognition within the diagnostic process within this study suggests the need for medical practitioners to incorporate greater acceptance of parental insights. Regardless of gender.

As such the statistical findings relating to the lack of diagnosis for girls with Asperger’s Disorder prior to the age of 7 and the predominance of diagnosis between the ages of 14 – 20 years, supports the assertions voiced  by both many adult women with AS (Simone, Lawson,) and parents within this survey, that there is a strong need for those within the medical profession to redress their gender bias  within all areas of diagnosis in order to increase their diagnostic capabilities so that they can more accurately diagnose and assess the needs of females on the Autism Spectrum as a matter of urgency.

 

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36 thoughts on “High Functioning Autism in Females – Addressing the level of misdiagnosis reported by parents of daughters with Asperger’s Syndrome – High Functioning Autism

  1. There is also a huge number of mothers our there who have had their children diagnosed on the Autism Spectrum who realise through their child’s diagnosis process, that they are on the spectrum themselves. Most of us cannot afford to get a diagnosis for ourselves and many feel there is no point getting a diagnosis this late in life (30′s and onwards). It would add weight to the way the women were treated by Dr’s as having our own social difficulties would cause us to have more difficulty conveying the issues our children are facing and also the confrontation confidence to stand up to the Dr’s. If all the women out there dealing with this were officially diagnosed then the awareness and credibility of female diagnosis would rise and the process of diagnosis for young girls would be easier and be received with better understanding and outcomes. I feel the statistics on numbers of girls with ASD vs the number of boys would in reality be a more matched and even statistic rather than the heavy ended boy rate of diagnosis that we currently see.

  2. When I read the article above it stirred up so many memories and feelings of frustration that I felt compelled to reblog it here.

    I don’t have a daughter, but I am a daughter and I believe I am probably somewhere on the autism spectrum. When I was a young child (50+ years ago) nothing was known about Aspergers syndrome and autism was the result of “frigid mothers”. Kids didn’t have “behavioural disorders” they were just plain naughty and undisciplined – everything was blamed on bad parenting – and people never took their shy, awkward, socially clueless daughters to be assessed by a psychologist. So, I bumbled through life as best I could – as everyone does – but always wondering how other people “knew stuff” that I didn’t but was somehow supposed to know, and why I was often told by my mother in her angry/frustrated/scolding tone, “You’re old enough to have more sense!”

    When trying to get a diagnosis for my 3rd son (then aged 2 years, now almost 21) I told our paediatrician that I was worried my boy might have Aspergers Syndrome, but my ideas were dismissed by the doctor who told me it was parenting issues. I argued that as I already had 2 older sons I was quite capable of knowing that there was something different about my 3rd son, but still I was not taken seriously. Two years later he started preschool and the teachers noticed his differences as well and cautiously took me aside and very nervously explained what they had observed about his atypical behaviour. They were expecting me to be upset about this news but were surprised when I was PLEASED with what they told me. FINALLY my concerns about him were validated and proper assessment was begun via a paediatric centre recommended by the preschool which eventually led to a diagnosis by a psychologist with the Autism Society of NSW (now ASPECT). Throughout this time I was doing a lot of reading about autism and Aspergers syndrome, including reading first hand accounts by adults with high functioning autism, or Aspergers Syndrome. In many cases it was like reading about my own life experiences and it was then that I finally realised (at age 38) that I too was most likely an Aspie! It explained so much about why certain things in my life had unfolded as they had. It also gave me new insight into the rest of my family, with some individuals standing out as also being somewhere on the spectrum, especially as they had children with certain ‘quirky’ behaviour, some being diagnosed with ADHD. We were always a delightfully weird and eccentric bunch, each with our own challenges, and finally I knew why.

  3. It is even more difficult for those of us on the spectrum who’s parents didn’t act as advocates. I am a female with Autism but was not diagnosed until my early 30′s. I spent half of my life in therapy, against my parents will, because I had serious social and sensory problems. My parents told me I was behaving poorly on purpose. My therapists gave me one diagnosis after another and gave me more and more medications.

    I was given anti-psychotics because the doctors thought my sensory problems were all a result of being on the verge of schizophrenia, even though I didn’t hear voices or see people. I was given bi-polar medication because they thought I was “soft bipolar” whatever that is. Unfortunately the bipolar meds made me bipolar while I was on them. When I told them the medications made me worse they told me I was wrong. The medications I was on made it harder and harder for me to function and I began to have panic attacks because I couldn’t cope with the side effects. Instead of listening to me my doctors simply said that my doses needed to be increased on my meds and then they gave me xanax, valium, and lithium to combat my anxiety.

    Now that I have a proper diagnosis from both a neurologist and three separate Autism specialists I have been taken off the the crazy arsenal of meds. They have put me on very mild medications to help with my ADD and a new med being used off-label to help with some of my Autism core symptoms. I finally feel like a person again. In some ways, I am back to square one since I am still and always will be Autistic and will always have severe sensory problems. But at least now I have doctors that believe me and don’t label me as crazy.

    It makes me sad to think that my life might have been much different if a doctor had properly diagnosed me as a child or young adult. I would have been placed in special programs to help me with learning skills and may even have had an aide that attended my classes with me. I would have been saved from almost 15 years of being a drugged up crazy person and would have instead been guided in how to manage my Autism disability.

    • Thank you so much for sharing your story Northerngirl. I am so sorry that you have had to experience so many years without help and support. This is exactly why pure research, that is research that does not take as it’s starting point the erroneous thinking of past eras but instead reveals the truth of what’s happening to women and girls on the Autism Spectrum here and now, is so vitally important. I sincerely wish you all the best.

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    • Hi Katharine. The data has not been released as yet to the public. Once all of the initial analysis has been conducted and the relevant articles written I’m sure it will be available though.

  5. I was diagnosed at 57 yrs old. I’ve studied autism for many years and have my postgrad in AS. I married a man with AS. It was only after seeing Tony Attwood’s DVD of a conference in Women with AS and reading Rudy Simone’s book “Aspergirls” that I realized they described me. I got my diagnosis and now feel it explains a lot of the happenings in my past life – and present.

    • That’s fantastic Kathryn. I’m sure that there are many women of our age out there who have AS but have never been diagnosed. Thank you so much for sharing your journey. I hope that more women will become aware that their “quirks” may be more than just a case of personal “oddness” and be able to find a greater sense of self understanding through an increased awareness of the way in which AS presents in women.

  6. Hello. This was one of the first blogs that I began following when I started blogging, a year ago. I was wondering if you’d like to join my Multimedia Autism Advocacy Tribe on Triberr. My blog already has a link to yours but Triberr would make it easier to share your posts and easier to stay up to date with them too. In case you don’t have a Triberr account yet, it is free to set up. Sorry for posting off topic but I couldn’t find an email address or contact form. :-)

  7. Hi, I’m new here. My daughter will be 5 in a few months and was diagnosed at 3 1/2 as having ‘high functioning autism’ and ADHD. The psychologist said she was ‘too social’ to fit the criteria for Asperger’s Syndrome (at the time of diagnosis) though as she is maturing and becoming more aware, she is certainly in the ball park. She is highly intelligent, highly oppositional, extremely verbose and can go through mood extremes. She attends an Aspect school and is thriving on the social and learning opportunities. Probably not relevant trying to distinguish now because they are getting rid of the Asperger’s title all together this year. But I ask, what exactly is the difference? Subsequently my son was diagnosed with PDD NOS. He’s not even 3 yet so I am looking closely to see what evolves there with his development. Any enlightenment on this topic is appreciated.

    • Hi Sleep Fee Zone. Firstly can I just say that there is a lot of opposition to the so called phasing out of Asperger’s Syndrome within Aspie circles. Many of us who fit the Aspie criteria as it now stands, may not fit the criteria for High Functioning Autism, so that in itself is a real issue and one that the boffins behind the DSM 5 are going to find is a greater problem than they first imagined. AS many are committed to making sure that Asperger’s Syndrome as a valid condition will not be done away with just because psychologists stop diagnosing people with it.

      So what’s the difference between Asperger’s and High Functioning Autism? Well it depends of who you talk to, but from my point of view there are a lot of significant differences between the two that have not as yet been addressed.

      Aspies for years have been defined as having mind blindness (the inability to acknowledge anybody elses point of view), lacking empathy for others, lacking in imagination, having poor communication skills and extreme social awkwardness.

      Many of these early assumptions about Aspies have been proven to be un-true. Aspies are aware of the minds of others, they both have and show empathy for others, often at higher levels than the general population do, and they do not lack either communication skills when they are able to communicate within their own preferred method of doing so, or imagination. Just look at how many wonderful Aspie writers and poets there are out there. You can’t share your imagination with anyone if you can’t communicate.

      Yes Aspies have social awkwardness, anxiety, find it hard to follow the rules of others (this is mainly because the rules make no sense) and may have Autistic traits such as stimming etc but they do want to communicate, they do want to have friends and they do want to fit in as best they can.

      To my mind, when people talk about High Functioning Autism, they are talking about the very traits that Aspies have already proven that they don’t have: Mind blindness, lack of empathy, lack of imagination, lack of ability or desire to communicate, lack of awareness that they don’t fit in……….

      Every Aspie I have ever met has been acutely aware that they neither seem to fit in nor understand social rules.

      In order to be aware of this you must first be aware that you are not fitting in with other minds……. So no mind blindness there as far as I can see.

      To me, High Functioning Autism, is not now, nor will it ever be, the equivalent of Asperger’s Syndrome. I view them as having two very different and distinct sets of traits. Traits that have for so long been viewed as inter-changable that they have now been rolled into the one High Functioning condition.

      My advice would be to hold on to the Asperger’s label, as sooner or later the myth that all Autistics are some how experiencing the same thing, at varying degrees of severity, based on the concept of an Autism continuum or Spectrum, will one day also be disproven.

      Those with Asperger’s I believe are different from those with High Functioning Autism.

      The area of PDD-NOS is an interesting one and from what I can gather, it’s there only to recognize those children who already defy the so called invisible boundaries of how Autism is defined as presenting in a child. Given that these boundaries are already little more than made up perceptions in the first place, it is little wonder that the DSM 5 is now opting to include PPD NOS as an Autism spectrum disorder.

      I mean really, given that they’ve never come up with a rational for PPD NOS, yet they seem to have one for Autism, how could they not resist the temptation to lump PPD NOS in with Autism?

      Apparently we’re all aboard one big complicated, and contradictory Autism train.

      My own daughter is also going through extreme mood swings. Some times she appears to grasp social rules and cues, yet this is all it is. The appearance of understanding. Often it takes for a personal experience to occur in order for her to cement particular social rules in place. I think Aspies, particularly Aspie girls own the true definitions of ‘learning life the hard way’…. but this is only because for them…. there is no easy way.

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  9. Thanks seventhvoice :P I think my girl is becoming aware that there is something ‘different’ about her, but she doesn’ t know what that is. She will say things like ‘mum when I have trouble sleeping I just start downloading movies in my head’, and ‘I don’t know how to calm down’, She tends to get bullied a bit by other kids, usually older ones, because she appears to be older than she is. She is orally sensory and has always been a thumbsucker, and this can attract the bullying and taunts of kids who just don’t understand. There will come a time when I have to try and explain to her why she feels different and why she does what she does, but trying to figure that out without making her feel like a freak will be quite daunting.

    • I’m currently in a similar position. It’s hard to know what’s going to be the best thing to do for both our daughters. I’ve written a few posts on my daughter so feel free to dig through them if you would like too. I think I began writing about her in May last year.

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  16. You know how everybody asks, “what happens to those girl-children with Aspergers when they grow up and dont have any support?” “What hapens to them when they are never identified?”
    I am that girl.
    I am 42. Along with a string of failed relationships, lost friendships, self-imposed alienation from my family, missed educational and career opportunities, and also-self-imposed poverty, I also have a 20 year old son diagnosed with ADD and depression but who shows signs of possible aspergers, and a 2 year old who is presenting signs of being somewhere on the ASD spectrum (or speckled, as my husband and I like to call it).
    After researching extensively on behalf of my kids, I am 100% sure I have Aspergers and have a strong suspicion my husband may as well.
    My problem is, neither of us have the social/communication and executive skills to consistently fight for our kids, much less ourselves, and I don’t know where to turn. I want to fight for them but we’re both utterly exhausted each day with just navigating the world. I’m terrified that they will have to live the hell I endured and no one will take me seriously, including the county resource center for people with developemental disorders here in California. They told me I couldn’t qualify for any assistance because I only have a learning disability (how do they know from one phone call?” and therefore could technically “grow out of it”. They also have been terrible about helping my son even get an appointment- none so far.
    Does anybody have any ideas?

    • Kashi,… get yourself an advocate….. Advocates are professionals who can speak for you in meetings when you feel unable to speak for yourself…. they can make phone calls on your behalf…… and help you fight for your children’s rights……. Some advocates volunteer their time, others charge fee’s……. I hope that you can find someone in your area who can work as an advocate for you.

  17. Have just been through hell trying to get my daughter diagnosed in Perth, Western Australia. Have met two psychiatrists who told me girls don’t get aspergers/hf autism and a pediatrician who “couldn’t see it” because her speech was developmentally “normal”. Here you need a speech pathologist, psychologist (both trained assessors) and a paed/psychiatrist to all agree. Bloody ridiculous considering that my 15 yr old would go into meltdowns before each appointment. She has been diagnosed with high functioning autism now but the process is discriminatory and we need to do something about this. The diagnosis rates are wrong – yes girls get it but so called professionals in Oz do not recognise it!!! How many autistic girls are being mis-diagnosed you wonder. Parents we must be pro-active and work to change this as autism affects all aspects of my daughters life and it will be with her for life – no more mis-diagnosis!!!

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  19. Thank you so much for sharing this here I to have always struggled and I knew there was something different with my second daughter. I had her tested through the school district but academically they could not find anything wrong socially she was just shy. I had always pinned her as grumpy as she rarely smiled, had tantrums (still does but now I know they are melt downs), just seemed moody. However I was told I was just not strict enough or I was to mean depending on who you asked. I was also told she was just normal and my oldest was gifted so I just did not see it. My third seemed fairly normal and was a joy to take care of as a baby so easy compared to the older two. My fourth daughter was much like my second even in looks. I decided maybe they were right and that is just the way kids are and that I must be a horrible mother as my kids seemed anxious about everything. Then last year my second daughters sped teacher asked me if I had noticed my daughter does not smile much or make eye contact and if she gets upset you just cant get through I said yes she has always been like that I was told it was normal. She said I don’t agree (my daughter is 12 at this point) she asked if I would be willing to have her behavior looked at I said sure (the meltdowns have been getting worse). So they sent me home with some behavior questionnaires among them were gars and another asperger questionnaire. I put this off as I was dealing with problems in preschool with my 5th child and only son. I had been fairly certain my son had autism from a young age but he did not fit in my mind what autism meant my husband finished the special ed teaching program the year before and they lightly touched on autism. I also had not really pushed the issue as to many times I had been told it was all in my head. So I just tried to get him help for his learning issues, speech and motor skills through early learning at age 3 they exited him and told me they did not feel he needed any other services. I dont know what I thought other then it must have been in my head if they think he is fine. I put him in preschool a year later and after 3 months they were going crazy he would melt down if he did not get the color red to sit on, color with, paint with etc. He has always been obsessed with that color and various other things but they asked if they could have him retested as he did not count to 20 anymore and know his colors anymore etc. I said fine I will try to and put that off as well as I figured they would just tell me he was fine finally in January I made the appointment and took him. It was through the school district that had tested him at 3. They could not believe how much he had regressed and thought it was me at first I told them no he had only had a year with no preschool and I had worked with him. The psychologist was observing when I stated this and I broke down I told them I had problems with several of my kids and that no one listened. I had several who were great at math but could not do reading well. I had at least 3 with sensory problems to the point I have to buy special socks and other items. He looked interested and asked if I had time to do a more in depth behavior screening I said sure. After this screening he said well this is not a diagnoses but your son is 90% on the atypical screening. I racked my brain to remember what atypical was then I remembered it meant autism I was stunned even though I had suspected. I walked out and cried finally a reason know to figure out what that meant. I then went back and did those behavior screenings for my second as I am doing them I realized that my oldest fits many of the learning parts. LOL my father fits the whole freaking aspergers questionnaire. I struggled with the screening for the girls because it did not fit more then like 50%. I took them back and asked as I was now pretty sure my second at least had aspergers why it did not fit better. The psychologist for the school suggested I read aspergirls and aspergers in girls. WOW I realized after reading them I am probably also an aspie and why I never fit in ( I am 38). Like many other comments I realized why my family is considered odd.

    • Thank you so much Lady Di for sharing your experiences with your daughters and Autism……Your words are powerful and I admire your strength. Ironically not long after doing this research and writing this article I realized that my own daughter fit many of the criteria for Autism as well. We’ve been down a long road and we’ve both experienced lots of invalidation along the way but she has now been officially diagnosed….. which in turn has led to my own……Realization is a powerful thing isn’t it?

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