Question
My son is just four and I am worried he may have autism. He speaks a lot less than when his brother was the same age and spends hours just rolling on the floor with his cars, and his sleeping can be horrendous. When we are out with friends, he clings to us all the time, won’t talk to anyone and then can have these massive meltdowns.
I feel like I am constantly explaining and defending him when we are out, as people think there is something wrong when he doesn’t speak to them or gets overwhelmed. I have gone to my GP and he has put in a referral for the early intervention team and for an assessment of need. I am also on the list for speech therapy. However, the waiting lists are really long and I have no idea when he will be seen. I have also been trying to arrange private speech therapy and even the private therapists have long lists. One said she will see me in four weeks, but it all still feels like a long wait.
This makes me really worried as he due to start school in September. What else can I do?
Answer
Being on a long waiting list for your child’s assessment is very stressful. You can put your life on hold as you wait and you can feel disempowered as a parent. As you have not had an assessment to confirm what is at issue, you can second-guess your parent instincts and not be sure how to respond to help your child. Meanwhile, you are dealing with daily challenges without support and you can worry about what supports your son is missing out on. The important thing to do is to educate and empower yourself as much as you can while you wait.
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Keep in contact with services
I suggest you keep in touch with the services you are waiting for. Make contact with them regularly and inquire as to when your son might be seen, stressing the importance of him being seen as he starts school. The private speech therapist might be able to see your son soonest and they should be able to help with assessing his needs as he starts school.
Make contact with the school
Primary schools have specific policies about supporting children with additional needs and often have a co-ordinator who should be able to meet you in advance of your son starting. Explain your concerns about your son and how he is on a waiting list for assessment and ask them for support. They may be enrolling several children in a similar situation to your own and should be able to advise you and look at what supports he needs in school.
Learn about autism
There is a huge wealth of quality information online about autism and other childhood developmental differences. Empower yourself by taking time to learn and to connect with other parents online going through a similar journey. Even though you don’t have a definitive diagnosis you can still avail of the many quality resources online. There are many online support groups for parents children with additional needs as well as online workshops and courses for parents run by reputable charities and health services (many of which are free), either in Ireland or abroad that you can access online. If needed you may also be able to find local parent support groups that meet in person.
Tackle the challenges you face one by one
Don’t feel you have to wait for the results of an assessment before you can be proactive in responding to the challenges you are facing. Rather than reacting or waiting for the next meltdown, take a pause now and reflect on what triggers these meltdowns. Think about what is going on in the environment, and what is happening for you and your child. Remember for many autistic children, meltdowns can be caused by sensory overload and overwhelm. When out visiting perhaps your son is overwhelmed by the noisiness or busyness of the environment. It is likely that he can’t cope with the social demands placed on him to speak by people he does not know well.
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There are a lot of practical things you can do to manage these situations better for you and your son. You could reduce the amount of time he has to spend at these social gatherings and only pick the important ones. You could prepare a back-up plan if you notice him getting stressed. This might include taking him for a walk or a break in the car to play with comfort toys etc. You could also explain to family members you trust about his additional needs and ask them to give him space and reduce the pressure on him etc. You could also make social situations easier for him by inviting smaller groups of people to your home where he is likely to be more comfortable etc.
Take time to enjoy your son
Take time to understand and enjoy your son. Tune into his world and notice what he likes to play, how he communicates and when he most relaxed. Watch him during his favourite play and activities and find times when you can join and connect with him. Setting aside daily relaxing playtimes like this has so many advantages. It will help you understand his needs and how he communicates. This will make it easier for you manage the challenges that might occur during the day. Playtime can also create daily enjoyable times together to keep you both connected and reduce stress for everyone.
Finally, do seek your own support as a parent. Parenting a child with additional needs can bring extra stresses. Take time to understand what you need to manage and take steps to build this into your day as well.
- John Sharry is Clinical Director of the Parents Plus Charity and an adjunct professor at the UCD School of Psychology. See parentsplus.ie and solutiontalk.ie