Autism and Aspergers. My own journey and the discovery of how counselling can help. PART 1.
Updated: Aug 9, 2019
Life with ASD (autistic spectrum disorder) can be very turbulent, distressing, exhilarating, rewarding or just down right exhausting. Wether you are a family living with ASD or an individual trying to navigate your life around the rest of the world, counselling can help. How? First let us look at ASD or Autism and Aspergers to be more specific.
Autism was first identified by a man called Leo Kanner in 1943. He identified a triad of issues which were: the lack of a need for other human interaction, the need for sameness and an obsession with objects. Just one year later Hans Asperger found similarities in people he was working with but it was not until 1981 when Lorna Wing published an article, did Aspergers really come to light. (The Lancet 2015). Since then the understanding of ASD and Aspergers has grown, yet living with it can still be isolating and very difficult to manage.
As someone who has familial experience with ASD and Aspergers I am aware of the difficulties that come with living with the disorder. As a counsellor I am aware of the needs to help support clients with ASD and Aspergers. We can get technical and look at the WHO (World Health Organisation) who say that Aspergers is part of ASD. That they are pervasive developmental disorders, characterised by social interaction difficulties, communication problems and they commence in childhood. However I am talking from real life experience as someone who has lived with, and grown with ASD. I know it is a difficult, confusing, scary and often frustrating disorder and that is from the outside looking in. From the inside looking out, well I can only go by what I have seen and listened to from family members. What they have been able to tell me. They are often bemused by the rich dialect we have, the nuances we use, the subtle 'reading between the lines' info we utilise to communicate. Their absolute dismay when a routine is changed - something as benign to us as changing the car route to school. This is enough to send them into a spiral of anxiety, fear and sometimes extreme anger. Unable to articulate their feelings and not able to even understand them themselves. Not knowing when they take things literal. I remember once when my son was about 10 I was having a bad day coping and said "you are driving me up the wall today". He looked at me very seriously and said 'Mother I cannot drive" whilst looking at said wall!! You can probably imagine my guilt and dismay at what I had said. I will say too it did offer me a chance to laugh and to remind me how much I loved this human being and all of his eccentricities and differences.
Our families journey started 22 years ago when my second child, my son was 18 months old. I thought he was deaf. He wouldn't respond to human voices, didn't interact with us. Would line his toys up and just lay there looking at them. By 2 he still hadn't tried to talk and thankfully my health visitor listened. Knowing I wasn't a mother who worried, she knew I had a real concern and took it seriously. The September before his 3rd birthday we had a mutli-disciplinary assessment. 1 week of all the professionals looking at, examining and testing my son. I had been reading up myself what it could be and was convinced it was Autism. Their answer: ooh we can't diagnose autism yet, but it is a semantic, pragmatic language disorder, with fine and gross motor skill issues and other 'global issues'. It is lifelong however. What had I done, where had I gone wrong, what could I do now, could I cope? What was his future? All of these questions rattling around in my head. I felt so alone. At that point not many family and friends had heard of ASD. Not being able to see the wood for the trees was an understatement. I had no-one to talk to, and when I did the response often was 'he's not that bad' or you can send him to a special home' or 'he will grow out of it'. None of which helped. I wanted to understand the world from his perspective but also for someone to be able to understand mine.
Over then next few years the family grew, 2 more daughters. During this time we had support, Portage would come out. Helped me to play and communicate with my son. I found out that people with ASD think in pictures - how must that be? To 'see' everything people talk to you about. Yet pictures played a huge role in our lives. Pictures for home life, school life, family. We could communicate by showing a series of photos of things he knew. I learnt that not all professionals at that time really understood either. One time at language therapy he wanted a train. I knew what he wanted because he had communicated in his way. The therapist wanted him to say it verbally. They withheld the toy until he was sobbing under a table and had wet himself. He was 5. When asked what do I do when he becomes like this I said "I don't let him, I communicate so he understands'. They decided they needed to change tactics and I decided I needed a different therapist! At this point his vocabulary consisted of 10 spoken words and an ability to understand some 2 or 3 word sentences. I learnt that visual communication was the way forward.
There was so many days I felt lonely and isolated. No one fully understanding what any of us were going through. Anxiety levels would rise at the thought of change. Going to public places would send it through the roof. The coping mechanism we had - to do things individually. One parent looked after him whilst the other took the other children out. Even shopping. Can you imagine what it must have been like for him? He would see one of 'his' toys in the shop window. Why is it there, why isn't it home, I want it back. How do you explain this to someone who is in a blind panic and doesn't have the communication abilities yet? Avoidance was an amazing coping mechanism for us then. We learnt where we could go as a family and where we couldn't. No family cinema, bowling, noisy arcades at the beach. As for parties and family gatherings well.......
Over time my younger daughters started showing 'tendencies' as it was called. One was diagnosed with severe global issues, and both had a language disorder. This was now becoming familiar. We had strategies for this, we had photo books, we had games to help them interact and learn. Yet they were different. We had been told it couldn't be ASD, not many girls get it. They are presenting differently so it isn't ASD. They are copying their older sibling. All of this didn't sit right. I knew my children, their differences, their behaviours and what was copied and what wasn't. That loneliness again..... I hadn't heard of the National Autistic Society at this point. Where could I go to be listened to? There wasn't many people who knew or understood ASD, certainly no counsellors I knew. Plus going to a counsellor, thats a failing surely???? Little did I know then that it would eventually be one of the strongest things to be done.
Then the fight for school support started. More rounds of assessments, reports to be written, behaviour scrutinised. One of the hardest things I had to do was write my own report on his issues. 6 pages of negatives. By the end I felt life was hopeless, that he was destined for a life of trauma, misunderstandings, unhappiness and isolation. I was a terrible mother, writing all of these things. Was I damaging his future, his life, was I degrading this lovely, little boy? After months of this we got his hours for school. Full hours too. Throughout this time, we had link parents, someone who knew about ASD. Someone who understood him and me. It was like a lightbulb moment, there are people who can help and understand. I think that thought alone gave me strength. Being able to talk about what I was feeling, what he had been through, the empathy. It was amazing. Even though they wasn't counsellors they knew what it was like. They had experience, they had understanding and they didn't judge me or how I felt. Was this what counselling was going to be like? I still hadn't found a counsellor at this point, neither did I have time. As parents we put our children and their lives first. We come way behind on the looking after list, but if we don't look after ourselves, then who will look after them?
This blog is about a journey with ASD. The trials, tribulations and joy it can bring. The differences between girls and boys with ASD and the challenges they both face. In the next blog I will look at their journeys, the differences they have and the similarities. How counselling helped them and me and the importance of having the right support. I know the strength it takes to ask for that support and the benefits reaped from counselling, having someone to listen, understand and not judge. This journey helped me become the counsellor I am today. It has given me an insight into ASD, from both sides and enables me to support others coping with ASD in their life. With the help of counselling though, we all can get through. If you need support call me on 07305 676680 or email firstname.lastname@example.org or use the contact form.