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Widespread Discrimination Against Autistic Mothers & Autism Parents

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AutismAdvocate
AutismAdvocate

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It's been going on a very long time and is getting worse and worse all the time.  A 1991 article regarding six families, all falsely accused of 'emotional harm', when it was actually Asperger's that was responsible for their children's presentations:

"Asperger's Syndrome - Who is Being Abused? Archives of Disease in Childhood 1991; 66: 693-695"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1793147/pdf/archdisch00649-0033.pdf

"Six case histories of children referred and admitted to a psychiatric inpatient unit at a tertiary referral centre because of concerns about poor functioning and possible emotional abuse are presented.

On initial assessment the children appeared to be well functioning and the impression was confirmed that their emotional needs were not being met by their parents.

After detailed inpatient appraisal the diagnosis of Asperger's syndrome was made in all six cases..."

Parliament have known about the issue of autism families being wrongfully targeted since at least 2003: http://www.publications.parliament.uk/pa/ld200203/ldhansrd/vo030205/text/30205-10.htm (start at 5 Feb 2003 : Column 300 and see particularly Column 316).

This inquiry promised in 2004 did not happen - why?

​"Asperger's abuse inquiry pledged"
http://news.bbc.co.uk/1/hi/health/3687612.stm 

Article about an autistic woman's childhood, during which, her parents were falsely accused of abuse due to misrepresentation of her autistic behaviours, read about the lasting the trauma that professionals caused to her and her family:

"The Damaging Legacy of Parent Blame"
https://www.psychologytoday.com/blog/aspergers-diary/201203/the-damaging-legacy-parent-blame

NAS Safeguarding Conference January 2015 conference video - Tim Gilling and his wife were falsely accused of MSBP/FII:

"Getting it Wrong: The Impact on Families"
https://www.youtube.com/watch?v=RDKS6NmAEWo

So WHY is this still going on?!

On page 9 of this 2016 FII/MSBP presentation document, Dr Danya Glaser lists autistic mothers as perpetrators of FII.  This is shocking disability discrimination.

United Kingdom Human Rights Committee "Human Rights Violations Against Parents That Are Autistic, Have an Autism Spectrum Condition"
http://www.autismwomenmatter.org.uk/featured/human-right-violations-against-parents-that-are-autistic/​

"Despite there being no cogent evidence to suggest ASC women are unable to competently mother their childrenthere are personal reports from both women and practitioners that mothers may risk being judged and misunderstood on the basis of their ‘non-typical’ responses or characteristics or even just preconceived misinformation about the nature of autism. Parents that cannot home school and are aiming for inclusive education within the education system can find their autistic differences and unmet disability needs in accessing the system to be wrongfully interpreted as character flaws. Barbara Martin of Cheshire based ‘Multi Sports’ is an advocate that has assisted autistic parents within schools. She states “autistic ladies are focused on getting to the bottom of their child’s difficulties and having the right supports put in place. They particularly cannot tolerate injustice but their intense focus can be perceived by non-autistic people as obsessive or controlling”. Mothers perceived this way can often be accused wrongfully as obsessing over their child’s disability to the detriment of the child identity and be labelled (without psychological reports) as Fabricating Illness in their child. Please see Case Study Three, School and Fabricating Illness.

One mother reported that she agreed to her children being removed, under the impression that the children were being taken for 72 hours as a form of respite. She was shocked to be given a few hour's notice the following day to attend court."

"Autism: A Hidden Pool of Undiagnosed Mothers With Condition Emerging"

https://www.theguardian.com/society/2016/dec/26/autism-hidden-pool-of-undiagnosed-mothers-with condition-emerging 

Autistic women are, however, still likely to remain undiagnosed. A survey by the National Autistic Society found that 42% of females have been misdiagnosed, compared with 30% of males, while twice as many women were undiagnosed compared with men (10% compared with 5%). But experts are warning that these mothers risk having their children forcibly adopted in the fight to get them diagnosed and supported, as social workers misinterpret the parent’s autistic traits as indicating potential harm to the child. “Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould."

"Positive and Negative Experiences of Mothers with Autism"
https://insar.confex.com/insar/2016/webprogram/Paper22166.html

"Mothers with autism and mothers of children with autism were equally likely to have had contact with social services in the UK, with similar outcomes. Disturbingly, approximately 1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption. Finally, rates of allegations and investigations of suspected fabricated illness amongst children with autism and their siblings were two orders of magnitude higher than the known incidence the UK. 

Conclusions: Mothers with autism would benefit from far more and better tailored support. Allegations of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.  The stigma associated with autism may be a barrier to accessing services. Further research should consider the mental health implications of being a mother with autism. There is a clear need for more and better autism awareness within the UK."

Going on DESPITE:

"Parents on the autism continuum: Links with parenting efficacy"
https://doi.org/10.1016/j.rasd.2016.02.007

"Group 1 consisted of 109 parents (29 fathers and 80 mothers) with ASD clinically diagnosed in both parent and child.These parents all had a clinically-confirmed ASD diagnosis and at least one child who also had been diagnosed with ASD Mothers in Group 1 did not have low parenting efficacy relative to other groups, despite being comparable in AQ scores to their male counterparts. Our experience is that mothers of children with ASD are often more accepting of the personal impact of ASD, are frequently highly active in pursuing resources and support for their child ("The Complete Guide to Asperger's Syndrome" Attwood, 2007), and more open to studying and developing their skills as parents (based on the couple/family literature,this is generally more characteristic of females than males even in nonclinic families). Mothers' attention to detail, logical thinking, and persistence, combined with a tendency to approach rather than avoid family problems, may increase the chances of parenting successes and therefore build a stronger sense of parenting efficacy.

"Adults and children with Asperger syndrome: Exploring adult attachment style, marital satisfaction and satisfaction with parenthood"  https://doi.org/10.1016/j.rasd.2010.06.001

"Nor did the presence of a child with AS in the family elevate the prevalence of insecure adult romantic attachment in our study in contrast to Kissgen et al.’s (2009) findings for AAI reminiscences of parental attachment in households with children with a different disability (ADHD). Indeed, we found that even respondents in Group 2 (with both a spouse and a child with an AS diagnosis) were as overwhelmingly securely attached as control parents of similar age, gender and family size in without ASD anywhere in the family. ...the positive qualities (e.g., loyalty, intelligence) that high-functioning spouses with AS may often bring into marriage (Attwood, 2007) may conceivably compensate for difficulties in such a way that internal working models and spousal interaction patterns are not disrupted in ways that might diminish the neurotypical spouse’s adult attachment security over time.

Somewhat surprisingly, global satisfaction with marriage remained equally high irrespective of the presence versus absence of an AS diagnosis anywhere in the family and was likewise uninfluenced by spouses’ attachment security. Thoughts of divorce were higher if the respondent had an insecure attachment style, but this was as true in the non-clinic control group as in families with AS and, indeed, there was no difference among any of the four diagnostic groups on this variable, nor did total marital quality show significant main effects or interactions due either to attachment security or the presence versus absence of an AS family member when these two potential predictors were considered in conjunction with one another. In other words, marital satisfaction seemed relatively robust against influences of AS in self, spouse or child in this admittedly atypical sample of unpaid volunteer families living with AS who had remained married long enough to be rearing a child aged 3–18.

Equally surprisingly, for parenthood satisfaction, results showed that parental AS diagnosis (either in the self or the spouse) did not significantly diminish the satisfactions and pleasures that respondents derived from their parenting roles. Nor did the security of respondent’s adult attachment style."

http://tbinternet.ohchr.org/Treaties/CCPR/Shared %20Documents/GBR/INT_CCPR_CSS_GBR_20656_E.pdf

"Sarah Hendrickx in her book ‘Women and Girls with Autism Spectrum Disorder’ reiterates this point in context of family life. “Women with autism who had a child with autism spoke of a special bond with that child and of having the intuition to know what their child needed even when it was different to what all the books and advice stated”. Sarah elaborates on the positive benefits of shared neurotype (child and parent being autistic) “the heritability of autism can be a blessing for some girls growing up with autism in families where similar characteristics may be inherent in parents”. 

So why is this gross disability discrimination going on against autistic mothers?

AutismAdvocate

March 08, 2018 - 8:35pm

Neurotypical parents of autistic children have it almost about as bad.

Autism Eye Magazine:

"Parents Accused of Fabricating Illness"
http://www.autismeye.com/parents-accused-of-fabricating-illness-in-their-child//#more
Full article here:
http://media.wix.com/ugd/58c8f1_211d0efb4ae842f5aba2e2d5b1519d42.pdf

"Refrigerator Mother theory At a paediatrician near you?" 
http://www.autismeye.com/digital-edition/files/assets/basic-html/index.html#6-7

"Council unlawfully took autistic teenager into care and banned parents from seeing her alone"
https://www.mirror.co.uk/news/uk-news/council-unlawfully-took-autistic-teenager-4368205
 

"The schools that spy on 'Munchausen Mums': Teachers accuse them of lying about children's autism to get attention"
http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html

There is a tidal wave of false accusations of FII (the renamed Munchausen's by Proxy), emotional harm, neglect and abuse being made against autism families across the UK.

The trauma caused to families is enormous, not to mention the waste of public funds.  But then it is happening in some instances to avoid spending resources.

http://www.hcbgroup.com/site/blog/education_blog/parents-face-new-obstacle-for-sen-support

 "In recent times, a new tactic has been used by Local Authorities when dealing with perceived to be ‘problem parents’; the involvement of Social Services. In practice, this is becoming more commonplace."

"...it is becoming more apparent that Social Care Departments across the country are quick to conclude that it is simply ‘bad parenting’ as opposed to considering the features of the diagnosis."

"If however the parents are intent on seeking funding for further support or a specialist ASD placement (via the SEN Tribunal) then this procedure is often used as a means of halting any challenge to the Authority regarding educational issues; a quite shameful tactic. Unfortunately, situations like this are becoming the norm."

"As opposed to working collaboratively with the family, many Local Authorities will go on the offensive. Any perceived challenge from parents will be a catalyst for Social Services involvement and a host of issues for them to face, most notably child protection procedures..."

AutismAdvocate

July 16, 2018 - 8:01pm

And how tragic the outcomes for families:

"Are Thousands of Children with Autism in Care for Erroneous Reasons? Quite Probably…

There is widespread ignorance of the fact that symptoms of attachment disorders and autism (ASD) are frequently indistinguishable. Even more problematic, the very symptoms of autism that differentiate it from attachment disorders have come to be interpreted as indicators of serious deprivation or neglect - when in fact they should be taken to mean quite possibly the opposite."

https://www.rightpro.org.uk/s/article/Are-Thousands-of-Children-with-Autism-in-Care-for-Erroneous-Reasons-Quite-Probably

We all know how poor the outcomes of children in care are.  Imagine how traumatic it is for any child to be wrongfully taken from their parents, magnify that many times over for an autistic child, who feels trauma more easily and deeply and struggles more to recover, who is more at risk of mental ill-health and who can be really distressed by change.

The diagnostic manuals (http://traumadissociation.com/rad) state that attachment disorder cannot be diagnosed if a child is autistic and says that autism should be ruled out when assessing for attachment disorder.  In order to prevent parents accessing resources, not only are diagnostic criteria ignored but sometimes autistic children are misdiagnosed with attachment disorder.

Is it any wonder so many autistic children end up in the criminal justice system as adults?  Not to mention the trauma caused to their parents.  Autistic mothers are being deliberately targeted and the human cost is appalling.

January 15, 2019 - 7:59am

Sadly this is a common event as family services is reliant on doctors to make the diagnosis of the children with ASD. The pedatrician gets it wrong in not spotting female autism because of masking its results in parents marked as neglecting their child. The child goes into a mental collapse into secondary school where all the pressure is put on the child to conform and recoils back on the parents to protect and the parents come under fire for child not attending school.

It push the parents to nerves breakdowns, separating because told  not to look at Autism, so puts the family in no man's land. The primary school first to pickup if there is autism, but gets short down by all services as not trained to spot it.

Then have the GP service targets the parent through clincal reporting requested by family services in supporting the parent abuse  because GP service has no insight, lack the ability to spot Autism while child neither attended the surgery as no allowance is made for the hidden disability. The NHS complaints process only sees good or bad practices, not there is something missing from the service so ends a dead end in raising concerns as parents.

As a former mental health professional worked Iin forensic psychiatry as full time OT as & HCA for 15yrs I experienced this parenting blaming that pushed me into a nervous breakdown which pushed me into hospital, so was weird to meet the staff I used to work with as a patient. Coming out of hospital loaded up with my own ASD support, used to reverse the whole situation to get our child confirmed ASD diagnosis. Standing up for yourself takes entire life away in defending, considering allot of parents cannot afford legal defence as beyond most parents ability. Family services can act like judge & jury without a fair trial in blaming the parent, compounded if the parent has autism no allowances made within meetings, because they completely ignorant what it is to autitic with sensory overload.

Picking through the issues what support is real or not from support services. It really comes down one thing, for parents only receiving advice how to manage a child with ASD and that is it on support. So one moment shooting away at parents with children with ASD, than say sorry, dumped back on the parent being praised for doing good job, but by then the whole family is traumatised which adds extra layer of problems not just within a Autism family.

It's weird as I given large chuck professional career to caring for mental health patient. But a,os myself faced over 30yrs of missdianogsis I also had hidden autism because the abuse in my former schooling got hidden away.

Its concerning when mistakes made with missdianogsis, that allot of protection in keeping it that way so the Austim person becomes a victim of wrong treatment. The lack of knowledge of front line services, like GPs and lack of communication between NHS services tend to remain separated. Family services only can bring criticism into it, claiming to put the child first, but finding the work done by parents under constant blaming, living in fear.

It's taken all proffessionism to stand up protect family, but resulted traumatic  experences for parents and child.

 

AutismAdvocate

January 16, 2019 - 12:45am

Everything you say is true - and more. But the issue is even when there is an ASD diagnosis, the parent-blame culture means they still won't listen to parents. Social workers are not trained in disabilities letalone autism and refuse to accept that what they are seeing is due to autism and not abuse or neglect. Then there is the arrogance of refusing to admit they got it wrong, they'd rather save face and keep the locomotion train going. Devastates families and really harms the children. All the while they are blaming parents they are not providing the support the child needs. If a parent is traumatised from false accusations it will only affect their ability to provide fully-present parenting also.