Emma Leigh-Currill
This blog is written from experience within our family and is not intended as a guide of what parents should or shouldn’t do. Parents must prepare their child for an autism assessment in whatever way they feel is most appropriate for their child.
Our son had shown various autistic traits from a young child. These traits caused him some difficulty within structure social settings (like school) and were stopping his development in this area so we felt it best to home educate him while we all figured out that best way to support him. I would say that I am critical of the education system and current curriculum but my son’s school was very proactive with identifying his needs and then planning to support him. Our issue was that we believe that exposure therapy (which in essence this was) can help but that he needed much more 1:1 support than school were able to give plus also time away from the exposure. 6hrs a day in an enforced social environment, with all the expectations that this incurred, was just too much as he had already become a situational mute.
Home education gave us time to talk with him about his difficulties and although this took a few years for him to fully understand his own challenges, he was able to articulate himself about just how debilitating social situations were for him. During this time we’d talked about the possibility of having an assessment when he was older and also used the word ‘autism’ and explained what that was. My son was always told that this was a possibility and that he may or may not be autistic and because he was home educating he’d mixed with a wide range of neurodivergent people so this never concerned him at all.
After 6 years he chose to go back to school. An IEP was written and he had a half a term of learning support sessions in order for him to build relationships with learning support teachers in case he needed help in school. This proved to be beneficial for him because when he did have difficulties he was able to use Teams and self advocate for himself writing messages rather than having to talk to teachers face to face (something he could not and still cannot manage). We decided not to have an assessment for autism until after he’d competed his first year at school to see the whole picture of his needs, should he have any. He did have needs that we felt needed more than just, ‘He has social communication difficulties,’ because the average secondary school teacher has not had much, if any, SEND training during their PGCE. This means that their knowledge of what a social communication difficulty is will be limited which impacts their effectiveness in being able to support SEND pupils but also how supported SEND pupils (my son in this case) feel. Having an assessment that leads to a diagnosis does give my son a label and vocabulary in which to talk about his needs and he will then be protected under the Equality Act 2010 which offers him legal protections that he/we can insist on should the need arise.
Again we talked about the possibility of an assessment and my son said that he wanted to to find out. He also said that he wasn’t worried about an assessment because we’d talked about it since he was younger.
I have heard of children not being included in their own assessment preparations in that questionnaires were filled in, both from parents and schools, but the child was not asked anything nor prepared for the face to face or online assessment. I would never criticise a parent for choosing what they believe to be the best approach for their child -you know your child better than anyone and you will have your reasons as to why you do what you do- however, I would say that I’ve heard that children who’ve not been prepared can (I say can and not do) have an existential crisis about who they are, who they were and who they will be in the future. A diagnosis plus all the information they may be given afterwards and any strategies/therapies/changes that might be made can be overwhelming. If a child has always been aware that everyone else has been aware of their difficulties and conversations have already started this can avert such a crisis.
My son filled in his own questionnaire which we found a very good exercise in helping us to understand him better even before the assessment took place. (My husband, my son and I had an evening together where we asked the questions from the questionnaires and we listened to our son’s replies. We found out things we didn’t know, but thought we did, that have really helped us in knowing what he needs. I typed up his responses making clear they were his responses and then included a line or 2, when needed, to share what my husband and I thought.)
Waiting until he was older (13) was a plus for us. We were able to do this because he wasn’t at crisis point, which can so often happen. By providing a supported environment at home we were able to enable our son to develop his skills at a pace that suited him and he was able to withdraw when he felt the need or things became too overwhelming. Being in a highly structured social situation, like school, is difficult for my son so we always knew that going back into school he might need more support and understanding than his peers. I do think that being in school (and not home edding) would have meant we would have needed for him to be assessed earlier because there often just isn’t room in the curriculum for difference, especially when it’s nerodivergent based.
During the assessment he took the lead and answered the questions asking for clarification when he needed it -he is a little like me in that he doesn’t always understand exactly what the question is asking and does get a little cross with overthinking the possible answers! I was so proud of his ability to self-reflect because he really is very capable of explaining just what he thinks and how he feels.
For us, waiting until our son was older was an important factor to getting the right diagnosis. He has changed and developed over the years with some things staying constant. As a little boy he was full or too much energy. He’d spend time just running around a chair, he’d climb anything he could and jump off from far greater heights than any of his peers. He’d walk on the the top of the monkey bars (he did that when he was 2) and he made random noises and movements with often certain ones getting ‘stuck’ and staying around for a while (‘Potato!’ has always been a fondly remembered repeated word). Had we gone for an assessment earlier I do believe he would have been diagnosed with Tourettes and very possibly ADHD too. We noticed noises, words and movements came and went but that he didn’t make any noise or movements in social situations so we felt that the root cause of them was probably more from an autism base rather than anything else.
What was left after everything came and went was autism.
Preparing your child for their autism assessment is a very personal thing and absolutely you must do what you feel best is for your child. You know them best but I would say in our experience with all our children and their various assessments they’ve had over the years we have always been honest and open and they have know everything, and why, that was happening. They were very much part of of their own assessment process and finding out how their brain worked.
