Ms Linda Comerford:

On the question of the impact on the wider family, parents only ever want the very best for their children. If a one notices that one's son or daughter is not meeting his or her developmental milestones or if something else sticks out for one, the first thing a parent will want to do is to get help and to access the therapies and services to remedy that or at least to help with it. However, it often happens that parents reach out for support but do not know where to go because there are no clear guidelines and time will have passed before they find out that they need to apply for a needs assessment. The type of assessment available to parents and children depends on where they are in the country. For example, Ms Murphy and I could have very different experiences in accessing assessments for our children. Ms Murphy may have a good experience with her son and I could have a horrendous experience with my daughter. Her son may be assessed at home and at school, yet my daughter may only be assessed in a clinical setting. Therefore, there are vast differences in service provision.

Parents are trying to manage the needs of a child at home when they do not really know what to do. They are not qualified therapists or professionals and do not pretend to be. Consequently, they are trying to do their best, while caring for other children. Many families have more than one child with extra needs. For example, in my home, three out of four of our children have extra needs and juggling that is really difficult. I have spoken to families the length and breadth of the country and many of them are suffering from burnout. They believe they are failing their children, despite the fact that they are doing everything they can for them. Burnout is very real and that cannot be overstated. I say that as a parent who has suffered from extreme burnout. It was an horrific place to be and there was little or no support. There is also a fear among parents that if they say they are suffering from burnout, they will be threatened with the possibility of their children being put into foster care by the HSE. Therefore, they know they need help but are afraid to reach out for it.

This can have a huge impact on relationships, whether they are with partners or extended families. Sometimes due to the fact that extended families do not live with the child, they may not see the differences the parent sees and the child may behave differently in different circumstances. Often, people will say that a child does not look as though he or she is autistic or has a disability. This makes it very difficult for parents and it is stressful.