Positive & negative experiences of 325 autistic mothers vs 91 typical mothers, online survey ‘autism and motherhood’

“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” 

Motherhood_poster_1_
Saturday, May 14, 2016: 11:30 AM-1:30 PM
Hall A (Baltimore Convention Center)

Background: There is little awareness of parenthood as an identity and social role for adults with autism. The sensory, cognitive, and social aspects of autism impact individuals throughout the lifespan, but the experience of parenting in mothers with autism has not been addressed. We therefore sought to explore this, both to highlight areas of strength and to uncover areas of vulnerability. 

Objectives:  To explore the experiences of mothers with autism in the following areas: (1) pregnancy, childbirth and the postpartum period, (2) self-perception of parenting strengths and weaknesses, (3) communication with professionals in relation to one’s child, (4) social experience of motherhood, including disclosing one’s diagnosis of autism in a parenting context, and (5) interactions with social services and the family courts in the UK.

Methods: We used a community-based participatory research model, and recruited an advisory panel of mothers with autism. We co-developed and disseminated an anonymous, online survey for mothers with autism. We recruited 325 mothers with autism, and, for comparison, 91 mothers who did not have autism, but had a child with autism.

Results: Mothers with autism and comparison mothers were similar in age and marital status. There were differences in education (Χ2=15.301, p<0.01), gender identity (Χ2=9.354, p<0.01), and age at first birth (t=2.3482, p=0.02) between the groups. Mothers with autism were more likely to have experienced pre- (Χ2=13.772, p<0.01) or postnatal (Χ2=7.4339, p=0.02) depression. Mothers with autism reported greater difficulties in areas of parenting such as multitasking (Χ2=43.417, p<0.001), coping with domestic responsibilities (Χ2=30.355, p<0.001), and creating social opportunities for their child (Χ2=7.8881, p<0.01). Communicating with professionals about their child was stressful for mothers with autism. Mothers with autism were more likely to report feeling misunderstood by professionals (Χ2=18.356, p<0.001), greater anxiety (Χ2=32.751, p<0.001) and selective mutism (Χ2=39.679, p<0.001), and not knowing which details were appropriate to share with professionals (Χ2=36.752, p<0.001). Mothers with autism were more likely to find motherhood an isolating experience (Χ2=4.8558, p=0.03), worry about others judging their parenting (Χ2=12.001, p<0.001), and feel unable to turn to others for support in parenting (Χ2=14.717,p<0.001). 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.

 

 

 

Source: https://imfar.confex.com/imfar/2016/webprogram/Paper22166.html


11 Comments

  1. I have mild autism or what it’s called Aspergers Syndrome, I had 3 kids they all have mental issues, one has the bipolar disorder,
    another one suffers mild psychosis and another one battles depression.
    well no one ever took any of children first because they were all born in Portugal and so was and I have always been very protective of my children, and because in Portugal if you’re poor no one is going to diagnose you with a mental health issue unless you have extremely erratic behaviour my kids mental health issues started developing when they were adults the first 2 kids and the 3rd when she was a teenager, as for me people viewed me as either rude, arrogant or pedantic person, and in some cases as being eccentric.it was only when I started searching the internet and doing self-assessment quizzes that I discovered that in fact I have Aspergers Syndrome or a very mild form of autism in every quiz that I take I always 41% in a rank of 0 to 100
    and also I have to say that in Portugal it’s not customary to steal children from their parents unless there is extreme evidence of abuse or danger to the child

    • admin

      Unfortunately the UK is one of the few European Union countries that practice forced adoption. Accusations of fabricated illness and ‘future emotional harm’ are used to take children away from families where no past or present abuse of any kind has occurred. It is pure discrimination against autistic families. Without support, these mothers are struggling to particpate and defend themselves. They need our community to rise up for them.

      • David N. Andrews M. Ed., C. P. S. E.

        You have any evidence of that? Serious question.

        I saw a very similar sort of situation a dozen or so years ago in Finland (where I now occasionally get asked to consult on stuff).

        • admin

          Hello David,
          Yes, the evidence is in the mothers who now do not have their children. In the UK mothers get gagged and face prison if they talk of their experiences. There are very few advocates that support these women. AWM is in contact with many.

          • You want evidence??? go and speak to those mothers who are now without their children it’s appalling what is going in this country so as 60 Portuguese mothers who have had their babies snatched by the so called social services

  2. Evidence I have seen is adopted children being assessed for aspergers syndrome and as AS is highly heritable the mother probably had it too…
    Also I have witnessed an aspie 19 year old who lives with her aspie mum have her boy taken into care soon after birth
    So cruel
    Am on a mission now

  3. Melanie Buchanan

    I have shared this to many groups. I realise how many years of work it has taken and how much involvement and bravery has gone into it.
    Thank you for all of that.

  4. Yasmin karim

    Hi my name is Yasmin karim plz can someone get in touch with me I need advice and guidance

  5. Cheryl

    I have Aspergers and am a single mum in Australia, all of those negatives can be true of my parenting at different times, but I try to learn what is best for my children, one of my children is also diagnosed with Aspergers and another I believe is on the spectrum but phsychologist doing tests doesn’t believe girls suffer from autism. I have found that there are great advantages to having Aspergers for my children also, firstly I have been able to bring them up in a way that naturally reduces their anxieties. I understand and don’t judge their meltdowns,unfortunately this slowed down their diagnosis. I have also been able to teach them in ways thy learn how to be more social. I am more dedicated to getting it right than most other mothers and do research into how to be a good parent. When I had family first involved the only negative they could find with my parenting was my autism and they rated me as an average mother in most areas, slightly under in two areas and slightly over in providing social outlets for my children. It is often more difficult and very tiring at times. But like most parents we just want to do what is best for our children. In my experience people with autism try harder than most to communicate well and understand others, which are great qualities in a parent if you ask me. I think forced adoptions are very offensive and likely to create even more issues to deal with for the parents.

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