Things to Consider Before Referral:
It is not a small or an easy decision to refer your child for autism assessment, and if parents decide to get their child formally assessed, this is one of many choices they face. For example, should they tell family members, friends, should they tell their child and their siblings? Should they wait till their child is older? This can be overwhelming.
Autism Assessment Referral
Some parents notice differences that they want to understand more so that they can help their child, and make sure that others put appropriate support in place to help their child learn, form positive relationships with others, feel good about themselves and enjoy life. These parents often decide to refer their child for assessment to find out if they are autistic.
Some parents request referral for autism assessment because differences that they have noticed are impacting negatively on the family and they do not know what to do. Some request it because the differences that they see fit the classic profile of an autistic child that has become a stereotype. I have met families where the young person has told the family that they want to be assessed because they think that they are autistic. In my experience, these young people are usually always correct, but this can be a shock to parents who have never considered this possibility.
Referral is sometimes recommended by nursery or school, and this can be very hard for parents. It is not uncommon for most children to present differently at home and school, but this can be a sign that there might be underlying factors that can help explain two different accounts of the same child’s communication, play, relationships with others, attention and thinking skills, emotional regulation, sensory processing, and behaviour. It is very hard to endorse a referral if you do not see any reasons to do this and this situation needs to be managed very sensitively and with great care. It is not easy to hear this about your child if you have never thought about it and you have not noticed anything to make you think that your child might be autistic. Professionals should never lose sight of the fact that there is a child and their family at the centre of any referral, and they are the most important people in this process.
I have been involved in situations where families were told to get their child assessed for autism and they were not ready to go through this process. The timing was completely wrong, and it was upsetting for everyone. When this happens, they might reject a diagnosis, they might have very negative thoughts and feelings about what they view as labelling their child. They might not be ready emotionally to manage this and have not support network in place to help them cope. They might decide to not share the diagnosis, I have met young people who do not know that they are autistic, I have been involved with schools that do not know that the young person is autistic. This can have a lot of repercussions that can be difficult for the child and affect how they see themselves and how there are viewed by others. It is very complicated, but parents can’t be blamed for this as they were not ready to go through this process and we should not make anyone do this unless they choose to get their child assessed.
Age
There is no right or wrong age to do this at, parents request referral when they feel assessment will be helpful. When differences are small, when they are inconsistent and have little impact at home, it is a hard decision to make. Parents do not want to put their child through this process without good reason to do so, and when possible signs are mild, they are unlikely to do this for obvious reasons. In my experience, some ages are easier for the child than others, but every child, young person and family is different, and it is impossible to generalise. I have met quite a lot of young people aged between 12 and 16, although some were younger and some were older, who do not want to be assessed. They are struggling with peer pressure and want to fit in. This is hard for most teenagers; we all remember how difficult growing up is and how awful secondary school can be. It’s not a great time to be told that you are autistic. For many young people this makes them feel even more different to their peers, and that is the last thing that they want. Of course, there are others who embrace this information, and it explains a lot to them and normalises differences that they were very worried about. It depends on the individual and we have to consider this in all referrals.
If the timing seems wrong, I talk to families about this, and we discuss if this is the right thing to do. For many people when they get a diagnosis, nothing, and everything changes, and it can be very difficult to manage. You are still the same person, but now you have a different lens to look through and interpret past and present experiences and this can be very difficult. We all build up a sense of who we are from a young age, and diagnosis can shake this.
Who to Tell?
This is another area that involves difficult decisions, and people have different opinions about who to tell and when. I have met parents who did not want to tell their child, I have met young people, e.g., aged 17 and 18, who did not know that they were autistic. Some parents think that telling their child is more damaging than not telling them and they worry about stigma and stereotyping. I have also met parents that tell their children at a very young age, e.g., 5, and want to be open about this to reduce stigma and stereotyping. Everyone has different ideas about this.
I have observed the following:
- It is easier for children to be told that they are autistic when they are younger as they do not face the peer pressure that older children experience and they are not as aware of stigma and stereotypes. Research reports similar findings (https://journals.sagepub.com/doi/10.1177/13623613221086700).
- Some teenagers reject the diagnosis when they are told, and it increases mental health difficulties as they are not ready to go through this process and the timing is not right for them.
- Some children and young people feel relieved as it explains things that they have noticed about themselves and they feel less worried and happier.
- Family members often do not know much about autism and this can be very difficult as they might disagree with diagnosis, disagree with parenting styles, etc., and sometimes parents delay telling them as they have enough to manage without conflict with the wider family.
- It can be extremely helpful for schools to know, but I have had a few situations where schools did not agree, usually when it was autistic girls who were masking, and this was very hard for the child and for parents.
Recently, I gave a talk at a school, and we were discussing the pros and cons of diagnosis and one of the questions was about whether you should tell your child’s friends’ parents and most people in the room felt that their child should decide who they tell. These are difficult situations and each child, family and situation is different.
Private or NHS?
This is not a choice for everyone, and I am well aware of that. It is well-known that most NHS waiting lists for autism assessment are very long, which is very hard for children, young people and their families.
Guidelines for autism assessment that must be followed for assessment to be valid can be found at: https://www.nice.org.uk/guidance/cg128 Read these carefully before contacting private organisations or individuals and personal recommendations from trusted sources can be very helpful.