Sarah Hendrickx is an independent specialist consultant and trainer in Autism Spectrum Conditions. Sarah is autistic with a late diagnosis of Asperger Syndrome in her 40s. She has a lifetime of personal experience of autism, its mental and physical impact and how to live with it and shares this during training along with her professional expertise.
She travels internationally and has delivered over 1000 autism training sessions and speaks at conferences worldwide She has also worked with more than 200 autistic individuals as a coach and consultant in care, schools, relationships and employment. Sarah has written 6 books on autism and related conditions. She was featured in a BBC Horizon documentary on autism.
You were diagnosed with autism at 43, after already having written several books on autism. What first sparked your interest in this research?
I had always known I was neurodiverse, having had a diagnosis of dyslexia, Tourette and suspected ADHD plus a lifetime of anxiety disorder diagnoses, but I had always considered my life history to be too chaotic and varied to fit an autism profile. My education in autism as a professional and personally as a partner to an autistic man was focused on the traditional loner, literal, small life profile of autism. I knew that I understood it and that it was likely that others in my family were autistic, but I couldn’t fit myself into that picture. It was only through meeting increasing numbers of autistic women professionally and hearing their stories that I would be struck speechless by the similarities in our lives. Tales of multiple jobs, relationships and crises which mirrored my own life made me start to think differently. I learned from Lorna Wing, Judith Gould and Tony Attwood that females may present differently and then it all started to make sense.
What led to your interest in pursuing a diagnosis?
After my learning outlined above, it took me several years to undertake a diagnosis and another 3 years before I openly disclosed the diagnosis. It took me a long time to get the point where I knew I needed to know for sure from someone I trusted, but then even longer to feel comfortable about sharing that, especially as someone who works in the autism field. Despite my fears and reservations it has been for the most part a positive experience. I decided to go for diagnosis because I just wanted to know if everything I thought was true, was correct. I needed to have that conversation with someone who knew more about autism than I did and who I knew would be honest with me.
What are the benefits and/or drawbacks to receiving a late diagnosis?
The benefits I see in late diagnosed people are mainly in the sense of community and belonging they experience. Social media is a great place to connect with your ‘tribe,’ and I see people doing this every day. Diagnosis gives an explanation, a sense of relief, an answer which has often been sought for a lifetime. For me, diagnosis also gave me a framework by which to live my life more healthily. Rather than constantly trying to be what I feel I ‘should’ be, I am trying to live in a way which supports my autistic skills and minimizes my autistic stressors. The way I work, the place I live and the people I spend time with all reflect this new knowledge.
What unique challenges (if any) do married couples on the spectrum face?
Now there’s a question! To start with, we are all different and so I have no doubt that other autistic couples have different ups and down than my partner and I do. The good stuff about us both being autistic is that we are very straight talking, blunt and don’t play any mind games, which makes life very calm and peaceful. We both like to plan and know what’s happening and we both have set ways of doing things, which the other is happy to accept and accommodate. I think that if you know that certain things are important to you, then it can be easier to be accepting of that in others. For example, I noticed today that when Keith and I prepare our breakfast, we both have the same components: cereal, milk, yogurt, two types of seeds, carob powder, but we construct our bowls in a totally different order. His way is obviously the wrong way, but I can cope with that! I’m sure he feels the same.
The challenges for us relate to communication misunderstandings, poor reading of non-verbal signals and struggling to compromise or negotiate when there is conflict. Our disagreements reach the point of ‘let’s split up then’ extremely quickly because we can’t find an alternative that suits us both. So far, we have managed over 12 years of this and are still together, but it’s horrible when it happens.
What are some misconceptions people have about autism and marriage?
I think some people believe that autistic people lack the ability to love and connect with a partner, which is so very untrue. It may be that the autistic partner has a different way of expressing their love, but it is certainly there. My experience of couples where one or more partners is autistic is that the autistic partner is desperate to get it right for their loved ones, but often doesn’t know what that looks like, how to guess or what to do. This can look like a lack of care when in fact it’s a lack of having a clue what is required.
What topics are you most often asked to speak about or conduct training on?
In the past year both Happiness and Anxiety are very popular topics. People are starting to consider that autistic people have a right to be happy, rather than just managed or cared for. The knowledge of the different profile for some girls and women with autism is also receiving a lot of attention.
What’s one thing parents of females on the spectrum need to understand?
Don’t ever compare your daughter with her non-autistic peers and teach your daughter never to do the same. Teach her that she is good enough as she is. Teach her to be a first rate autistic person and not a second rate neurotypical person.
For many autistic girls, there is a striving to be ‘normal’ and to fit in, but being surrounded by neurotypical girls means that they become the model of perfection to which you aspire. Unfortunately, these girls may have a whole bunch of social abilities and flexibility which she may not have. They are also likely to be interested in stuff that she finds dull, leaving her feeling left out and socially stupid. It is important to give her the self-confidence to be herself in a world where other girls are different. Finding groups and hobbies which attract similar types of girls will help her find her ‘tribe’ – which is something that adult autistic women find very life-affirming.
What mistakes do autism advocates make?
Many autism advocates do amazing work and achieve great things on behalf of autistic people. If there are mistakes made, I would suggest it is assuming that their view of a happy life equates to an autistic person’s view of a happy life, and it is possible that the two may not be the same. My idea of happiness is solitude and silence or rewriting my schedule for the next month over and over again. If an advocate thinks that happiness is lots of social interaction and reducing my repetitive behaviours, then we do not have the same goal. Advocates must respect autistic people’s right to choose a life that suits them, not necessarily a societal norm. Judging people’s life choices as wrong because they are different is not acceptable.
How have you seen the neurodiversity movement impact people on the spectrum and their families?
I have given talks to parent groups in the UK and US and I am always so delighted when people come up afterwards and say that they have learned something about their child. Parents who are open and willing to listen to the experiences of autistic adults – which is what your child will turn into!! – seem to have a much more positive outlook on their child’s future than those who think life with autism is all doom and gloom. The achievements of autistic people have been widely spread on social media and should show that anything is possible with the right attitude and the right support. The key to this is embracing and understanding your child’s autism, rather than wishing it would go away.
For more information about Sarah Hendrickx’s consulting and advocacy work, visit her website: http://www.asperger-training.com/.
For more information about Sarah’s Hendrickx’s books, visit her Amazon page: https://www.amazon.com/Sarah-Hendrickx/e/B001JP1YAU.