Voices From the Spectrum #19: Lana Grant on Advocating for Autistic Mothers
Lana Grant is a specialist advisor and advocate for people with autism and their families. Lana has worked within the field of autism for nearly twenty years. Lana specializes in autism and females, particularly pregnancy and motherhood. Her book “From Here To Maternity, pregnancy and motherhood on the Autism Spectrum” was published in March 2015 by Jessica Kingsley publishers and is the only book that focuses on this issue. Lana is a trained birth partner (doula) specializing in supporting pregnant women on the autism spectrum and their partners. Lana has recently contributed to the Scottish Autism Right Click Women and Girls Programme. She is a passionate advocate for female empowerment and speaks for the NAS and other organizations about female issues. She also has a diagnosis of Asperger syndrome.
This week Lana shared with me some of her background and advocacy work for mothers on the spectrum.
How was your childhood different from those of your own children on the spectrum (in terms of supports, acceptance, obstacles, etc.)?
I wasn’t diagnosed until I was 38, so my childhood was difficult in terms of support etc. My mother says now that she can remember wondering why I never spoke to people outside of my family as a child. I was a selective talker. I remember the feelings of anxiety that would overwhelm me when I had to be out amongst other people. I was described as a shy child, and in my secondary years felt as though I was invisible at school. I can remember feeling disconnected with my environment and with my peers. I was introverted and wondered why my peer group seemed able to “do” life and yet I couldn’t. These experiences have helped me with my own children. I give them space and don’t put pressure on them to perform socially if they don’t feel up to it. My daughter has had a particularly bad time at school and at one point she was refusing to go. I didn’t pressure her to go. I allowed her time to breathe and deescalate her anxiety. Her school was telling her she had to attend and take her GCSE’s or she would “fail”. I told her that if she wasn’t well enough to do her exams, then she could do them the next year or whenever she felt well enough. We practiced breathing exercises and mindfulness. She eventually returned to school and completed her GCSE’s. She passed them all.
What are some of the unique challenges mothers on the spectrum experience?
As soon as you become pregnant, you are expected to invite other people into your space. From the maternity staff to the well-meaning member of the public who feels the need to touch your pregnancy bump. This attention can be overwhelming for autistic women. The social interaction is bad enough, but then there’s the sensory difficulties as well. Then there is the expectation that you will want to join groups…antenatal groups, postnatal groups, mother and baby groups. Women are expected to be more social than men, so this is an added pressure. If you’re not diagnosed as autistic, then your anxiety around attending these groups can be hard to understand. It can also be isolating.
Motherhood is tough, being an autistic mother is really tough, especially if you haven’t been diagnosed. Many women are parenting children who are also on the spectrum, so they identify very closely with their child’s feelings. This can throw up feelings of guilt (my child has anxiety like I do, therefore it’s my fault my child is struggling, I’m useless etc.). These feelings have a negative effect on the mother, which can link to mental health issues such as higher anxiety levels and depression. The problems become cyclical. Many of the autistic mothers I have worked with/met know that their child has difficulties and become “Dr. Google” moms. This doesn’t mean that they are making up their child’s difficulties, it means that this can become their special interest. There is a thirst for knowledge, as with many autistics, we have a desire to understand things and question and look for reasons for things. These mothers may read avidly and in meetings with school or health care professionals use jargon associated with their child’s needs. This can lead other professionals to speculate about Fabricated Illness Syndrome (FIS) also known as Munchausen’s by Proxy. This is a dangerous assumption and can lead to the involvement of other agencies which may also make a mother feel as though they are unable to parent. They may fear that their child/ren will be removed from their care. In some cases, this has happened.
We need to raise awareness of autistic mothers and hear their voices.
How do you self advocate today?
I wrote a book about pregnancy and motherhood from an autistic woman’s perspective. This was cathartic and also opened the door for other women to recognize that they are not alone in their complex feelings about motherhood. I have also set up a Facebook group Called Mums On the Spectrum and we have 41 members. This allows me and the other members to discuss things in a safe, non- judgmental environment. I do many talks about autism and female-specific issues, and this allows me to not only advocate for myself, but also for other women who may not be as far along their journey as I am.
How do you help your children learn to self advocate?
By teaching them to be self aware and proud of who they are. I have encouraged them to be proud of their autism not ashamed. Yes, there are times when autism makes things difficult, but it also makes them unique. Life is challenging, but I have always told them not to beat themselves up about things they can find difficult. We are all different whether we are autistic or not. What we have to do is respect difference in everyone.
What training topics are you most often asked to speak about?
I’m most asked to speak about autism and girls. How autism presents differently in girls and boys and my own experiences. I’m also asked to talk about pregnancy and motherhood occasionally. I would love to talk about this more; I think although we are further along with our understanding of autism in girls, we still have a long way to go. There are still professionals who think of autism as something that is only present in males, until this view changes, then autistic mothers are low on the agenda.
What mistakes do you see neurotypical parents of other children on the spectrum sometimes make?
I think it’s less about making mistakes but more about wanting things for their child that they think will make their child happy. The main thing I see a lot is NT parents wanting their child to have friendships. This is because in society we measure happiness by popularity and being liked. It is a myth that all autistics have little interest in other people and friendships. Some autistics don’t need friendships in the way many NT’s do. But some autistics do want friendships, but they’re just not sure how to go about making and keeping those relationships. Autistic people are individuals; one size does not fit all.
How can parents help their children develop a positive autistic identity?
Firstly, as a parent you have to accept the positives that are uniquely autistic. This in itself can be hard as many parents are given negative messages with their child’s diagnosis. They are told worst-case scenarios and what their child will be unable to do rather than a more positive view. Every child has their own bucket of potential, and they should all be encouraged to fulfill it. Talk in positive terms, and if your child is finding something difficult, then remind them of what they are good at. Let them know that you as a parent find math difficult, for example, but that you’re ok with that because you are really good at reading. Encourage them to accept that everyone is unique and different and that is ok.
How can parents help people in their communities grow in their awareness and acceptance of autism?
Talk about autism, share stories and listen to autistic people.
Anything else you’d like to say to the readers of this blog?
Many people tell me that they don’t want their child labeled as autistic as it is unhelpful and carries stigma. My answer is that in my experience children are labeled as naughty, difficult etc., which are negative labels. Isn’t it better to have the correct “label” and frame it positively rather than a negative label? Once a child thinks they are bad, they carry that label with them. My diagnosis saved my life. It didn’t give me an excuse not to do things, it gave me the reason why I found some situations hard and helped me to find strategies to cope.
Learn more about Lana Grant’s advocacy work by visiting her website: http://lana-grant.co.uk/index.php