Understanding autism and diagnosis in my children…

My two autistic children are different in many ways; including how I realised they were autistic, what I understood about autism, how I felt and how others reacted. Research disproved the early days when ‘refrigerator’ mothers were blamed for their child’s behaviour. However, parents are still being criticised and judged for how their child behaves, how they feel and react to a diagnosis, continuing the guilt and confusion in understanding how best to support their child effectively. For me these emotions were compounded at a time that saw the publication of Andrew Wakefield’s paper alleging a link between the MMR vaccination and autism, alongside a rise in Lovaas’ Applied Behaviour Analysis (ABA) therapy. A therapy I disagreed with wholeheartedly, even prior to my academic studies into autism, which I will reserve to explain in more detail on another occasion.

Although they differ significantly, my autistic children and those in my extended family, were similar in the fact that they were placid and ‘easy’ babies, not something many parent would query! And this is certainly not the experience of all parents of autistic children, where sensory processing, dysregulation and sleep difficulties can be communicated through extreme distress and difficulties with sleeping. Both of my children appeared to reach the usual developmental milestones up to the age of around 14 months.

In the mid-1990’s, my first autistic child followed what could be considered a more ‘classic’ route to a diagnosis. Although eye-contact was given and some language was acquired up to 14 months, this had disappeared by 16 months, alongside eye-contact and reciprocal communication. My belief was that they might be deaf, not turning to their name, or when there was a sudden loud noise. However, when they were in a distant room, the click of the video player would prompt a swift return to the room it was playing in. After a couple of hearing tests and speech and language assessment, autism was alluded to alongside a referral to a Child Development Centre (CDC). By this time, my child’s differences were very evident, particularly compared to their older sibling, lining up toys (yes Thomas the Tank Engine) or objects, having a very narrow diet (to the extent of noticing different brands of vanilla ice-cream) and playing whilst always holding 2 Playmobil characters in each hand. They did not finger point or use language, but singing and music was a way to connect with them. A multi-disciplinary team confirmed a diagnosis of autism at 2 1/2 years old, with the only advice being in the form of a leaflet for a local branch of the National Autistic Society (NAS) and referral to a local special school nursery.

In relation to the ’cause’ of my child’s autism, please remember I was just 25 years old and my understanding of autism up to that point was of Dustin Hoffman’s portrayal of Kim Peek in Rain Man (1988) a few years before. However, I developed my understanding through watching Open University programmes, which included a young Phil Christie engaging with children through physical play and mirroring the child’s behaviour, as well as Professor Simon Baron-Cohen talking about the Sally Anne test and Theory of Mind (ToM). I read books that would be seminal for me, such as Lorna Wing’s (1996) parent’s and professionals book about The Autistic Spectrum and The Siege by Clara Claiborne Park (1982), which showed me that it was not only boys that were autistic. The field and understanding of autism has moved on significantly since then.

Although I had a very supportive family living close by, it was a time of worry and confusion. This was mostly around safety, due to my child having no apparent awareness of danger, or the environment. I recall watching my child walking ahead of me and, as they appeared to join the group of strangers in front, I knew that if they had been given what they needed in life, favourite food and routine, I would not be missed. This danger and my child’s lack of fear around such things as deep water or traffic, required constant vigilance. In addition, my child’s squeals (of delight, or frustration) and meltdowns, meant I developed a thick skin, as I felt the eyes of other’s burning into me and saw them wincing, or scowling. Trying to keep positive and see the humour in situations often helped, the uninhibited nature of their very being.

Thoughts went to the future and I did not imagine that my child would have the understanding and independence other children might achieve. However, my focus was always on their happiness and enjoying being a family, albeit very different to the one I imagined. Diagnostically, although the CDC would see my child and reviewed them, they were reluctant to give any detailed suggestions around education provision and schooling. This prompted me to explore further what I should do. A very caring and proactive GP supported my child to have a diagnostic assessment at the NAS Centre for Social and Communication Disorders (now the Lorna Wing Centre), just before their fourth birthday. This was fantastic, providing detailed reports from Judith Gould and Joanne Douglas. However, it highlighted the need for autism specific support and preferably an autism school. Searching for the right setting provided nothing locally, and was mentally exhausting; unless our young family upped sticks and moved away from the caring family whose support I relied on. Luckily, my child also had the involvement of a highly experienced Educational Psychologist at the local authority, specialising in autism. When I was at my most desperate, she not only wrote a vital report in the 11th hour, she was able to provide me with the suggestion of a mainstream school locally that had a team of Teaching Assistants (TA’s) skilled in supporting autistic children, which was fully inclusive and integrated within age appropriate classes. This was a critical development and one that I will be always grateful for.

The diagnosis of my other autistic child was very different, their older sibling had received a diagnosis of ‘classic autism’. This became my view of what autism looked like. In addition, Andrew Wakefield had just published his report in The Lancet the year my younger child was born. There was a lot of press publicity building up to the report and simultaneously around Gulf War Syndrome, making the hype and fear around chemical causes of autism at the fore for parents of young children. Even to the extent that friends contacted me to ask my view on vaccinating their child, because I had an autistic child, which I politely declined to do.

It is very important to note here that there are no known links between autism and the MMR vaccine, and it is vital that children be vaccinated. At this time in my life, the Wakefield report was very real and had not been disproved. The fact an autistic child can appear to develop ‘typically’ and then appears to regress is not an unusual profile, although no one knows fully why this happens.

In the light of the Wakefield report, and lack of available single vaccines, I’m ashamed to say, that I did not get my next autistic child vaccinated with the MMR, until they were due to go to university! (Such was my psychological fear, even though I now know autism is very much a genetic part of my family, linking to a Broader Autism Phenotype (BAP). This did not include the early baby vaccinations, which were all given).

Due to very practical safety concerns, such as the ability to run after a child with no sense of danger, alongside caring for a baby, I waited until my older autistic child was at school before having another baby. As my younger child developed, they appeared to pass their milestones, such as language development and eye contact, passing physical milestones early, walking at nine months and having exceptional hand-eye coordination. Although it is important not to compare children, it is difficult not to do so, and my picture of autism was that of my older child. Albeit they shared a preference for bland and specific food types. I knew about Asperger’s Syndrome, through my reading, but it did not resonate with me, or fit my younger child’s profile. It was only on attending Nursery School that differences became apparent to that of the other children’s development. My child was not able to be left without becoming inconsolable, which would not abate as with most children. This meant that for 6 weeks a very graduated approach was required to enable them to adjust to the new routine and people. Over this time, it became obvious that my child did not have the same social understanding as the other children, although they continued to be a placid and gentle child.

Gaining a referral for a second child to be assessed at the CDC, aged four, I was prepared for what it meant. This was not the case for some family members and friends, because, in a one-to-one (1:1) situation, my child was polite, quite formal, articulate and kind, noticing the aesthetics of their environment and paying other’s compliments for the way they dressed. When asked to do something aged 3 years old, they were likely to respond with, “It would be my pleasure”. Very much showing how the right environment can reduce anxiety and facilitate the happiness of an autistic child. Some family members, friends and those who knew my children, associated the ‘behaviour’ communicated by my older autistic child as being the ‘real’ picture of autism, and to this day some find it difficult to understand that my younger child is autistic. During the CDC meeting, it almost felt like a choice to accept or decline the autism diagnosis; however, with school looming, I knew this would be important to have. Which certainly proved to be the case.

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