After diagnosis, it may take time to learn more about being autistic. This page aims to give post-diagnosis autism information to help navigate this experience.
You may also like to check out some of the information resources across the site.
One of the most important things to do post diagnosis is to fully immerse yourself in learning about autism. Read about autism, whether through charity websites, online support groups or books or watching videos or programmes about autism. Whether you are a parent of an autistic child or an autistic adult (or indeed both), it is important to learn about autism through the autistic voice, hearing about experiences directly from autistic people. There is a huge amount of knowledge, books and resources out there, all produced by autistic people. Following autistic advocates on social media is a great way to learn about what the autistic community cares about and what supports they need. Forming a strong understanding of what autism is and what autism isn’t is going to be a great basis going forward for how you support your child or yourself.
Supports that autistic people need are very individual depending on the person. Because there is nothing ‘wrong’ with being autistic any “treatments” or support should not target autism in general. Rather, the supports or treatments an autistic person might need are focused on the difficulties or challenges they experience as an individual. For example, if an autistic person is experiencing difficulty with communication in a specific situation they might visit a speech and language therapist. On the other hand, an occupational therapist (or OT) can be a useful support for autistic people who experience sensory challenges or challenging behaviours and can help them develop skills to manage these challenges. If they are experiencing significant anxiety, it might be helpful to attend a psychologist or psychotherapist to help specifically with their anxiety (ensuring the therapist has a good, modern understanding of autism and what can help). As a parent, if your child has just received a diagnosis of autism, the most important thing you can do is fully accept and understand your child, recognising where, specifically they need support. For a list of professionals, check here.
One of the best ways an adult can receive support if they have received a late diagnosis is by linking in with the autistic community. You may not feel ready to advocate for the community just yet, but join support groups or follow various autism advocates on social media. Immerse yourself in the community as much as you feel you can to get a better understanding of how you can cope with your diagnosis. There tends to be quite a focus on early-intervention for children and sometimes a lack of understanding for adults who have received a later diagnosis. As awareness and understanding of late diagnoses improves, the supports available to autistic adults will further develop and improve. When looking for supports, do not be afraid to ask someone what their experience with autism is and if they have experience of working with autistic adults, it may give you peace of mind that you are finding the best possible supports for you.
One of the most important things to do post diagnosis is discussing autism with your child. Speaking about being autisti with your child positively and openly can have a positive impact on them. Normalising the diagnosis can create an accepting atmosphere for your child. As a parent, you love your child unconditionally and you don’t want your child to feel any hurt or pain. You might worry that telling your child that they are autistic might “label” them and will have a negative affect on them. However, research has suggested that children who are open and understand that they are autistic generally struggle less with their mental health. Autistic adults who received late diagnosis almost all say that they wish that they had known about and understood their autism at a young age. They say they always knew they were different, they just didn’t have a name for it, and speak with huge positivity about now having an explanation. With regards to telling your child that they are autistic, the best way of introducing this to your child is talking about it as early as possible and often in a very normal way. Talk to your child about neurodiversity and how lots of different people have lots of different types of brains. Explain to your child that being autistic is a term that describes how their brain works, and how they like to communicate, how they experience the world. Speak positively about being autistic and show your child that there are many autistic people who are just like them. Normalise differences at home, let your child know that it is a good thing that we are all unique.
As a parent, you will understandably want to support your child to overcome things which they are having difficulties with. The most important thing to keep in mind with regards to “treatments” is that there should be no treatment which targets autism in general. Autism itself is not something that needs to be “treated.” However, your child may have specific challenges in different areas which they could use some help in.
Unfortunately, there are many ‘treatments’ for autism out there that are not evidence-based and can actually be detrimental to your child’s progression. It is very important that you choose supports or treatments that are credible and provided by credible, accredited professionals.
The first thing to do when you are looking at treatments for your child is to think what is the goal of this treatment? If you are looking to support for your child so that they will behave ‘not autistically’ or more typically then you should scrap this goal. Supporting your autistic child should be about embracing your child’s differences and uniqueness.
The goal of seeking supports for your child should be about your child being happier, more engaged and embracing of their identity.
A good way to gauge whether a treatment or support will have a positive effect on your child is by looking for feedback from the autistic community. Autistic adults are your best way of understanding the effects of a treatment or support and their past experience of that support is a great way of knowing what supports are ‘right’ or ‘safe’ for your child and which to avoid.
Choosing a support or treatment that is evidence-based is very important, however it is also important to note that just because a treatment is ‘evidence-based’ does not mean that it will suit your child or that it is a good treatment. There are many treatments in the past that would have had a strong evidence base but today these treatments are dismissed. Keep critical of the treatments you are considering for your child. Ensure the person providing the support is fully qualified and accredited. Have a look and see if they are a member of accreditation groups such as the PSI (Psychological Society Ireland), the IACP (Irish Association for Counselling and Psychotherapy) or the IASLT (Irish Association for Speech and Language Therapists). Ask in advance of seeing any therapist if they have experience of working with autism and the kinds of strategies and models they use and follow. For more information on next steps post diagnosis check our Autism Journey resource. It lays out the steps leading up to and after a diagnosis for your child. It is the first of three parts which will cover adult diagnosis and support.