What is Autism?

If you would like your child to be assessed for Autism, you can apply for an Assessment of Need. To Apply for an Assessment of Need, you need to contact your local Assessment Officer. You can find them through your Local Health Centre. Alternatively, you can download the Assessment of Need form and post it to them.

After you submit your application, you will get a confirmation letter from HSE and a date saying when they will start the assessment. They must send you this letter within 14 days.

If the Assessment Officer is happy that your child needs an Autism assessment, they must arrange a referral within 3 months of receiving your completed application. Once the referral is made there will be another 3 months for the assessment to take place. This is legally mandated through the Disability Act 2005.

If your child is diagnosed as Autistic, you will receive a Service Statement. A Service Statement lists the services the HSE proposes to provide to meet your child's needs and the timeframe in which those services should be provided. It is prepared by a Liaison Officer and must be completed within one month of the assessment report being completed.

There are two routes to accessing support via HSE’s Children’s Disability Service.

If your child has a difficulty or difference in one area (such as speech delay), it is likely a referral to Disability Services will result in you being placed on a waiting list for Primary Care. However, if your child has more complex needs and requires specialist services delivered by a team of professionals, they will be seen by the Children's Disability Network Team (CDNT). The CDNT can include professionals such as Occupational Therapists, Speech and Language Therapists and Psychologists.

As a parent/guardian, you can self-refer your child to the CDNT. You do this by completing the electronic forms housed on the HSE Children's Disability Services webpage. The team will review the forms you submit and based on this information will contact you regarding next steps.

If you are referred to the CDNT, the team will make observations of your child and listen to you. They may decide to proceed with a standardised diagnostic tool for Autism.

NEPS provides educational psychological support to all recognised primary and post-primary schools in Ireland. As part of this service, they can offer psychological assessments for children who have learning, emotional or behavioural difficulties.

It may be worth speaking with your child's Principal about the possibility of NEPS carrying out an Autism assessment with your child. In our experience, this route is the least common way of getting an Autism assessment.

If you are considering a private psychologist to complete the assessment, check the Psychological Society of Ireland (PSI) website to see if they hold a Chartered Membership. If you are concerned that the psychologist you are considering does not hold Chartered Membership, ask them for their 2023 PSI Chartered Membership certificate. Any chartered psychologist will be more than happy to clarify their credentials and qualifications to you and will understand why you need to request this information.

It is hugely important that your child's experience of the assessment does not reinforce any negative stereotypes they may hold of themselves, and instead empowers and supports them. When your child grows up they may want to read their report, so it is important that it does not make them feel like they have a ‘deficit’. It should highlight their strengths.

Look at the Psychologist’s website carefully to get a feel for their attitude towards neurodiversity. Is the language they use neurodiversity affirmative (exploring neuro differences, highlighting strengths and areas of support) or medicalised (referring to Autism as Autism Spectrum Disorder, focusing on difficulties and impairments)?

You should ask exactly what standardised tools are being used, and the purpose of using them.

The standard diagnostic tools used in Ireland are DSM-5 and ADOS. a diagnosis should not be given based on the ADOS alone. The ADOS is designed to be used alongside a parent interview, a child interview (if suitable) and clinical observations carried out by the professional.

If your child is also being seen by a speech and language therapist or occupational therapist as part of the assessment, they may also conduct assessments such as the Sensory Processing Measure.

While there is some variation, a diagnostic report will often include:

• Credentials of assessor
• Background and reasons for assessment
• Demographics of child
• Standardised tests used (with descriptions).
• Results of tests (you will usually see tables here)
• Interpretation of tests (what do those numbers mean?)
• Parent narrative/feedback arising from interview
• Child narrative/feedback arising from interview
• Conclusion and summary of needs and strengths
• Recommendations. This section is KEY! Often parents look for the conclusion (has the child been diagnosed) and worry less about the recommendations/summary of needs. However, the recommendations of the diagnosing professional are crucial when it comes to applying for certain school supports and even social welfare payments. These recommendations should go across multiple domains of the child's life; school, home, community etc. Finally, these recommendations should be individualised to your child, should educate you about your child's autistic experience, and empower you as an advocate.

Autism assessments usually involve at least one clinician with relevant training and expert knowledge. Teams of clinicians including psychiatrists, psychologists, speech and language therapists, and/or occupational therapists can work together to complete an assessment. These are called Multi-Disciplinary Teams (MDTs).

Most clinicians ask what your child was like around their 5th birthday. They might ask about your child's life and any mental health concerns, their learning needs, their medical history, and about significant life events.

The clinician will always want to spend time with the child being assessed and get to know them. To see what autistic traits a child might have, they should observe how they might react to different situations, and will likely use a standardised test/ tool to help them with this. The clinician will ask the child to talk on certain topics, to do puzzles and/or play games with them. For an older child, they will likely ask questions about their own experience of autistic traits and their own understanding of self.

The clinician will be looking to see:

• Are there current and past differences in social communication (e.g., is there a preference to communicate without eye contact)
• Are there interests and focuses that are specific or intense or passionate
• Is there a difference in the sensory experience of the world (e.g. might be very sensitive to noise)?

They may want to assess cognitive abilities, such as what sort of tasks the child can do independently and at school.

Clinicians use diagnostic criteria, or a checklist of observable traits or characteristics, to determine if a child is autistic. These criteria have changed over time based on a growing understanding of autism.When making a diagnosis, the clinician uses their judgement based on what they have been told by the child, the people who know them well, and what the clinician has seen first-hand when they have met with them. They might provide an alternative suggestion as to why the individual may be feeling different from others and/ or experience difficulties.

ADOS (The Autism Diagnostic Observation Schedule)
The ADOS is currently considered the gold standard of assessment tools in diagnosing Autism, and it is also one of the assessment tools that is used by the HSE.

A diagnosis should not be given based on the ADOS alone. The ADOS is designed to be used alongside a parent interview, a child interview (if suitable) and clinical observations carried out by the professional.

One of the most important things to do post-diagnosis is to fully immerse yourself in learning about Autism. Research using charity websites, online support groups, books or watching videos and 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 support 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.

Support that Autistic people need is 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 see a psychologist or psychotherapist to help (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.

One of the most important things to do post-diagnosis is to discuss Autism with your child. Speaking about being Autistic with your child positively and openly can have a positive impact on them. Normalising the diagnosis can create an accepting atmosphere for your child.

You might worry that telling your child that they are Autistic might “label” them and will have a negative effect.  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.

The best way of introducing the subject to your child is to talk about it as early as possible, and discuss it often in a very normal way. Talk to your child about neurodiversity and how lots of different people have 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 many Autistic people are just like them. Normalise differences at home, and 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 therapy which targets autism in general. Autism itself is not something that needs to be ‘treated’ or ‘cured’. However, your child may have specific challenges or experience specific barriers in different areas in which they could use some support.

Unfortunately, there are many ‘treatments’ being advertised for Autism out there that are not evidence-based and can be detrimental to your child’s progression. Supporting your Autistic child should be about embracing your child’s differences and uniqueness. It is very important that you choose supports that are credible and provided by credible, accredited professionals.

A good way to gauge whether a 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.

Many Autistic adults, especially women, can be misdiagnosed with mental health issues such as depression, anxiety or bipolar disorder. As a result, the prescribed medications and therapies are usually ineffective, which will lead to further feelings of frustration and poor self-worth. Undiagnosed Autistic adults may have spent time in a CAMHS (Child and Adolescent Mental Health Services) unit due to these misdiagnoses.

In some cases, undiagnosed Autistic adults may turn to drugs or alcohol as a coping strategy. Some people may only notice their autistic traits after entering a rehabilitation programme.

Although Autism is not a mental illness, a poor understanding of Autistic traits and an uninformed approach to treatment can cause significant distress to an Autistic adult’s well-being. With this in mind, an adult Autism diagnosis often comes as a relief.

Aoife Dooley was diagnosed at the age of 27.

“It’s like you’re constantly looking for an answer you don’t know the question to…When you get a diagnosis as an adult it’s bizarre because everything and nothing changes at the same time. You’re still you, but now you have the tools to understand who you are and how you work.”

Unfortunately, there are no public assessment teams dedicated to adult Autism diagnosis in Ireland.

Most adults who think they might be Autistic can only get an assessment privately. Most private psychologists in Ireland do not require a GP referral to access a psychological assessment for Autism. You can self-refer by contacting them directly. We advise that you undertake an assessment with a professional familiar with Autism in adults and who works in a respectful, neurodiversity affirmative way (i.e. that Autism is not seen as a problem to be fixed but a naturally occurring difference to be understood and celebrated).

It is advisable to talk to your GP first, and many private professionals require a GP referral. While your GP may only refer you to a private psychologist or psychiatrist, it is essential that they understand you and can see the demand for Autism assessments in Ireland and advocate for them appropriately. You will need to provide your GP with a precise list of why you think you might be Autistic, as they may still hold outdated ideas about Autism.

It’s important to remember that an Autism assessment for an adult is an exhaustive process to identify your neurotype, not a test you can pass or fail. Even if you aren’t recognised as Autistic, you will likely find answers during this process, whether it is a different neurodivergent condition such as ADHD or an anxiety condition with symptoms which resemble Autistic traits.

Some Autistic people choose to self-identify and don’t see the need to access an official diagnosis. This is valid and widely accepted within the Autistic community (particularly given how difficult it is to access a public assessment).

Some other people would like the opportunity to talk it all through with a professional and help get some clarity and understanding around themselves and their life experiences.

Going through the assessment process with the right psychologist can be very helpful and some people find it therapeutic. A significant benefit to accessing an official diagnosis is that it can help you access proper support and reasonable accommodations in college, the workplace, or in accessing disability benefits.

Due to financial factors, long waiting lists, misdiagnosis or even outdated ideas relating to gender, there are large numbers of Autistic adults who never received a formal diagnosis. Without a full understanding of themselves, these individuals may have grown up with anxiety due to sensory overload or the stress of ‘masking.’

Some Autistic adults may have spent time in psychiatric units when Autistic burnout is mistaken for a nervous breakdown. This can lead to them being misdiagnosed with a personality disorder or even given incorrect medication. These combined issues also mean difficulty entering and keeping long-term employment. Because there is no public route for pursuing an adult diagnosis, a private diagnosis may be too expensive to access.

An adult Autism diagnosis must be made by a psychologist or a psychiatrist. The assessment can vary between professionals, but there are some things that you can expect.

All assessments will include in-depth interviews and information gathering about your life and how you view the world. You will likely meet with the psychologist/psychiatrist (online or in person) for one or more interviews to discuss your experiences. Meetings may involve discussing your life, background, and why you think you might be Autistic. You will discuss information from your past that you believe is relevant and describe how you experience the world.

Sometimes adults seeking a diagnosis don’t show undeniable Autistic traits, as they may have learned to ‘mask’ or camouflage them over the years. A good psychologist or psychiatrist with an up-to-date understanding of Autism and a neurodiversity affirmative approach will be able to understand the nuances of the Autistic experience.

Some professionals may request that a parent or other family member be involved in your assessment (by meeting with them or providing additional information). But this is not always required, and many will put your voice at the centre of the assessment. If you do not wish for a family member to be involved, you can look for a professional who does not require this.

Getting an assessment as an adult should be a collaborative and respectful process between you and the professional. While the psychologist/psychiatrist will be using the DSM-V diagnosis criteria in the background, it should look like two adults working together to see if Autism is the right fit for your experiences. If you do not feel that this is the process you will experience with a particular professional, you may need to look around for a different one.