Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder (ASD) is a neurodevelopmental disability. It affects the development of the brain in areas of social interaction and communication.

ASD appears to have a wide spectrum. This just means that the symptoms and characteristics of autism can present themselves in a wide variety of combinations and can range from mild to severe. 

So basically two people with the same diagnosis can act very differently from one another and have varying skills.  Autism is also one of the “hidden” disabilities. Which means people on the autistic spectrum show no significant physical difference to their peers. But their behaviours and communications (or lack of) mean they appear different.

Approximately 1 in 100 people have ASD in some form in Ireland. There are some great organisation involved in helping people with ASD. So please remember you are not alone in this and someone will always help if you ask.

What are the characteristics of ASD?

Please remember that no one characteristic means your child has ASD, nor does your child have to have them all. But if you are concerned please speak to your GP first. 

ASD requires extensive evaluation by trained medical and psychology personnel to be diagnosed.

1.Deficits in social interactions and communication.
2. Restricted or repetitive patterns of behaviour and interests

Some children have a severe form of ASD lacking any language or social interaction skills. While others, who are considered high functioning, have moderate deficits in these areas.

Aspergers appears on the high-end of the spectrum. Some children with ASD may also have other conditions such as: Dyslexia, Dyscalculia, ADD or ADHD, General Learning Disorder,  Dyspraxia, Downs Syndrome, Hearing Impairment, etc.

Language/Communication Difficulties:

Assessment: How to help your child.

ASD is usually diagnosed around 2 1/2 (but not always) as some of the developmental stages needed are starting to be reached by then.

If you suspect something you can speak to your GP, or to the pediatrician during one of your child’s developmental checkups. They may send your child for a hearing checkup just to rule that out first.

If your child hasn’t been diagnosed prior to school you can ask your principal to refer your child to an educational psychologist for assessment to begin the process.

The assessment for ASD requires multiple disciplined teams. Once seen by the pediatrician, or Educational Psychologist, your child will be referred again to an Autism Team made up of a Clinical Psychologist/Psychiatrist, Speech and Language Therapist, Occupational Therapist and Social Worker.

The psychologist and therapists will then conduct an assessment of your child using recognised diagnostic assessment tools coupled with their observations of the child’s behaviours. Currently, the waiting lists in Ireland are anything from 9 to 18 months. You can go privately and have your child assessed but this can be very costly.

Once diagnosed the reports you receive will list recommendations for therapies and for educational supports for your child.  With this information, you will be able to refer your child to the relevant services and apply for an educational placement and special educational needs (SEN) supports. You will also then be able to apply for any state benefits you/your family may qualify for.

Autism Ireland has great information on all things ASD including educational, therapies and interventions.

They also have a section on a range of tax and benefits you can apply for here. It is important you apply for everything you can to help your child, your family and yourself.

If you do apply please make sure you:

1. Get organised by using a lever arch or A4 folder in which you keep a copy of your child’s assessments. You’ll need to send a copy with all applications you make, always keep the original yourself.

2. Keep a copy of all applications forms filled out.

3. Put a blank sheet of paper in front of any copy of an application you have made. On this record all calls made about that application alongside the date, time and person you spoke to.

Did you know?

On June 1st, 2007, Part 2 of the Disability Act 2005 became law. Under Part 2 of this Act, children with disabilities have a right to:

1. An independent assessment of their health and educational needs arising from their disability
2. An assessment report
3. A statement of services they will receive
4. Make a complaint if they are not happy with any part of the process

Your first point of contact is your local Assessment Officer who is responsible for your child’s assessment. Each Local Health Office has an Assessment Officer. They can assist you with your child’s application and help support you through the process.

The Assessment Officer is responsible for issuing your child’s assessment report. Applications must be made in writing on a standard form which is available from your Local Health Office. Call the HSE information line 1850 24 1850 or check out www.hse.ie for a list of Local Health Officers in Ireland. 

Your child’s assessment must start within 3 months from when the completed application form is accepted by the HSE. It must be completed within a further 3 months from the date on which the assessment commenced.

Children with disabilities are also covered under the Education Act 1998 and the EPSEN Act 2004 to name but a few of the legislation.

For Parents

1. If your child has been diagnosed then remember you are not alone. Please join a local support group. As other parents will give you much-needed advice and support to help your child, your family and yourself.
2. Get yourself informed about ASD and your child’s needs (see the recommendations sections of your child’s report) as quickly as possible. Information is power and will help you gain access to services and support your child and family need.
3. Apply for everything even if you think you won’t get it. No harm in doing so and authorities are notorious for not telling you what you’re entitled to. Again check the links above for entitlements.
4. Focus on the positive’s about your child. I know this can be hard at times but all children are a blessing. If you continuously focus on negative things it brings you down and doesn’t help your child, your family or you in the long run.
5. Don’t feel guilty for taking time for yourself. You can not help anyone if you’re working from empty yourself.
6. Feeling guilty about your child’s diagnoses, isolation, feeling alone and unsupported is a normal response at first and may reappear throughout your life when your child has a disability. That’s why I can’t emphasise enough getting you support from national, and if available local, groups or online (#ablehour on twitter is one such group) is important.
7. You may also wish to talk things through with a therapist to help put things in perspective and reduce your stress levels. I know it’s hard, I’ve been there too, but it does get better. I have a free group for mums to help with stress reduction strategies if you’d like to join.
8. Never feel guilty about your child’s behaviour in public and don’t apologise unnecessarily for it. Again other parents are a great source of information about the best places you can go as a family for an inclusive experience.
9. Don’t be afraid to highlight to companies they need to change for anyone with a disability. A good company will be delighted to take anything onboard you have to say.
10. Home should be a safe place away from stress. Have consistent routines is vital for ASD children. Use calendars and give one to each child for their room. Fill them in during the Christmas holidays to start the next year and make sure your child sees you mark off the days or marks it off themselves if they can. This is particularly important if you are leading up to a change in routine or have an appointment they don’t normally attend.
11. Make it a point to involve everyone in planning activities for the family. I found that a good time is after dinner once a week.
12. Spend time together as a  family and allow them to contribute and be listened to. I always found that when we engaged in family discussions over dinner it enabled everyone to have a say. But you may have to act as referee to ensure that all get a chance at voicing their opinions.

Work With Me.

Remember you are allowed to ask for support. No one is an island. If you need extra support then you can also work with me. We all struggle with stress and overwhelm from time to time. If you find this has become a problem for you and you’d like some support then schedule an appointment with me.