How do I access an Autism Diagnosis for my Child?
If you think that your child could be autistic the first port-of-call should be to visit your GP. Provide them with a list of the reasons that you believe your child could possibly be autistic. Your GP can then refer you to an early intervention team. Another thing that you can do is to apply for the assessment of need. Your local health office can provide you with the contact details for the local assessment of need officer. The assessment of need does not lead to a full diagnostic assessment but it is still helpful to get this done. The wait time for both the early intervention team and the assessment of need can be quite long but it is best to go on the waiting list for both of these services.
You can also access an autism assessment for your child privately. Typically, the waiting lists for a private assessment are much shorter than waiting lists for public assessments. However, this process can be very expensive. If you do not wish to get a full assessment done privately, it can be worthwhile to still contact a private psychologist with experience in autism and ask them what they think of your concerns.
If you do decide to access a private autism assessment for your child, it is important to check that private professional or clinic you go to specialises in autism, is multi-disciplinary and is conducting best practice assessments.
What is the diagnostic criteria for Autism?
The two main manuals available to professionals when looking at the criteria for Autism are the DSM-5 and the ICD-10. These manuals also include the diagnostic criteria for a range of other conditions and mental health disorders. This is the criteria that the assessment team will use in the process of seeking an autism diagnosis. According to the DSM-5, autism is characterised by persistent challenges with social communication and interaction coupled with restricted or repetitive patterns of behaviour, interests or activities. Sensory difficulties are also highlighted. It is important to note that the DSM-5 and ICD-10 do not reflect more modern perspectives on autism and use negative language and perspectives on autism throughout, not taking into account autistic strengths or how the environment around autistic children and adults can be disabling. A great many autistic people feel that autism should not be categorised as a disorder at all.
Who diagnoses autism?
Whether you are getting a diagnosis publicly or privately the assessment team typically consists of psychologists, speech and language therapists and occupational therapists. Sometimes a team might also have a social worker or a physiotherapist. The person who makes the diagnosis is either a psychologist of a psychiatrist. The psychologist or the psychiatrist takes the lead in the assessment and is very much supported by the other members of the team who offer insight on their areas of speciality.
Lists of Chartered Psychologists working privately can be accessed through the Psychological Society of Ireland’s ‘Find a Psychologist’ feature on their website.
Local autism parent support groups can often provide recommendations for private providers of autism assessments.
TIP: Before deciding on a clinic or professional, investigate if they have a speciality in autism.
How do I access a public autism assessment?
Applying for an assessment through the public route can be confusing.
Currently there are TWO different routes to an autism assessment publicly for your child (although both now result in a diagnostic assessment with the same HSE team).
APPLYING DIRECTLY TO THE EARLY INTERVENTION AND SCHOOL AGE TEAMS
The HSE has local teams supporting children across Ireland. Each of these teams supports children with different levels and types of needs. These teams usually include Primary Care, Child & Adolescent Mental Health (CAMHS), Early Intervention (EIT) and School Age Disability team (SAT).
The teams that assess for autism (as well as other complex developmental needs) are typically called the Early Intervention Team (for children 0-6) and the School Age Disability Team (for children 6-18). Although the HSE are moving towards all disability services being provided in the same way nationally (through a plan called Progressing Disability Services) there are still regional variations and where you live these teams might be called different names or organised slightly differently.
How do I request a diagnosis through Early Years?
To request an assessment or therapy services from the Early Intervention or School Age Disability teams, you need a referral from a health care professional (e.g. your public health nurse, GP, Occupational Therapist or Speech & Language Therapist).
If the Early Intervention or School Age team accepts your referral (i.e. if they agree that your child is showing significant and complex difficulties in more than one area of functioning), you will be put on a waiting list for an assessment with that team. Unfortunately, services are very stretched at present and the waiting time is likely to be long. You will be given an approximate wait time when you are added to the waitlist.
TIP: If you are confused about how the Disability Teams are organised in your local area, ask at your local health centre.
APPLY FOR AN ASSESSMENT OF NEED
Option 2 is to apply for an Assessment of Need. You can apply for this if your child was born after 1st June 2002 and you feel they have a disability (autism is classified as a disability). The aim of the assessment is to assess and identify health needs. Prior to February 2020, an Assessment of Need could lead to an official diagnostic assessment of Autism if indicated. However, under the new Assessment of Need Guidelines, children going forward will receive a brief “preliminary team assessment” and not a diagnostic assessment (so your child could not be given a diagnosis of autism following this initial brief assessment alone). However, if concerns are raised during this brief preliminary team assessment, your child would then be put on a separate second waiting list with your local Early Intervention or School Age Disability teams.
How do I apply for an Assessment of Need?
To apply for an Assessment of Need you need to contact your local Assessment Officer (found by calling your local health centre) and they will guide you through the application process. The Assessment Officer will look for information about your child’s difficulties. There are statutory guidelines about the timing of these assessments, with the Assessment Officer needing to arrange the referral within 3 months of receiving your application. Once the referral is made your child is supposed to have their assessment and a completed report within 3 months. However, again, as services as stretched there is often a delay with these.
NOTE: In some areas applying for an Assessment of Need may result in the child being seen sooner than a referral to the Early Intervention or School Age Team. In other areas, the Assessment of Need and Early Intervention/School Age Team waiting lists are merged and there is no benefit to applying for both. You can talk to your GP or Public Health Nurse about whether applying for both is necessary or needed where you live, but on balance it is recommended you apply for both.
How do I secure a private autism assessment?
Parents can also access autism assessments privately. This generally involves a much shorter wait time but has the downside of being costly due to the in depth nature of an autism assessment and the detail necessary in the final report in order to access services.
It is important to be aware that in order to access HSE services in the future, the assessment and report needs to include specific areas. If accessing a private assessment, find out beforehand if the following will be included in your child’s report:
- A cognitive or developmental assessment (this is particularly important in Dublin, where often access to services depends on it).
- The ADOS assessment undertaken in a multi-disciplinary way.
- A detailed parent interview such as the ADIR or DISCO.
Should I go public or private for my child’s autism diagnosis?
The main benefit to a public assessment is that there is no fee for the assessment. The main downside to a public assessment at present is the wait-time until your child accesses their assessment, which currently can be as long as 3 years.
If you choose to access a Private autism assessment, it is still recommended to also be referred to your local Early Intervention or School Age Disability Teams. Doing this means that you are linked in to the public system and you and your child can avail of public services if/when they are offered (e.g. parent training, Occupational Therapy or Speech & Language Therapy). It is a good idea to send in all information (including private reports) along with your application for Early Intervention or School Age Disability Services so that they have all the relevant information about your child.
What is the assessment process like?
The autism diagnostic assessment involves a number of key steps. The order that these steps take place depends on the team that are performing the assessment. One of the things that will have is an in-depth parent interview. The psychologist or psychiatrist will be following a gold-standard interview like the ADIR or the DISCO for example. The interview will cover questions on your child’s development, what age they spoke, what their eye contact is like, how they are socialising and if they have any sensory difficulties. You will be asked about your child’s strengths but unfortunately the majority of the focus during the interview will be on your child’s difficulties or challenges. Sometimes it can be quite an upsetting process but a good psychologist will support you throughout.
Another element of the assessment is a play-based assessment called the autism diagnostic observation scale (ADOS). Your child will be involved in this process and what will happen if yourself and your child will come in and the psychologist and another member of the assessment team will play with your child. The play will be dependent on your child’s level of language and the different things they do. This part of the assessment is all about seeing how your child interacts in a new room with a new person. A member of the team might call your child’s name to see how they respond for example. One member of the team will be taking notes throughout the process. Once the play session is finished and yourself and your child have left the assessment team members will discuss different areas like response to conversations, eye contact etc., When older children or teenagers are being assessed, they may undertake an assessment that is mostly interview based, and asked questions about their friendships and how they experience the world.
During the assessment process the team might also perform a cognitive or developmental assessment. This process does not always happen but it is useful to see where your child is at cognitively or developmentally apart from autism. In these assessments they could pick up whether your child has an intellectual disability as well as being autistic or whether they have any developmental delays. You might be in the room with your child for this part of the assessment, depending on their age. Much of the autism assessment process involves ruling out other possible conditions also.
The final session in the assessment process is usually an in-depth parent feedback session where the results of all the various tests are discussed. This is where you will find out your child’s diagnosis. The assessment process should feel collaborative. It is important for parents to remember that a lot of the information that the assessment is based on is actually coming from them, they are a crucial part of the process. The psychologist or psychiatrist will make recommendations on what you can work on next and what supports are available for your child. They should provide you with positive, strengths based information about autism and your child. You should receive the full reports of the assessment a few weeks after the feedback session (this can vary).
Download ‘Starting the Autism Journey’ a free resource for parents / guardians
Over the past number of years, Autism has enjoyed greater visibility and awareness among the general public in Ireland. However, there is still a level of uncertainty when it comes to how a parent or guardian might go about having their child assessed and diagnosed. Great uncertainty also exists among society in relation to what language is appropriate to use when talking about and to those on the autism spectrum.
AsIAm made the decision to publish ‘Starting the Autism Journey’ as a result of the high volume of daily correspondence from concerned families all over the country who didn’t know where to turn for help. They needed information, support and guidance about how to get their children assessed and what to do following a diagnosis.
This resource was produced in conjunction with Lucena Child and Adolescent Mental Health Services (CAMHS) in Dublin.
This recourse, the first of three packs, is for parents/guardians and includes a range of vital information on getting your child diagnosed. Below you will find the page numbers of all the sections in the resource.