You've got an ASD diagnosis - what now?

Last week we talked about some of the things to think about when looking at getting an assessment and diagnosis of an Autism Spectrum Disorder for your child. This week we are taking the next step and looking at what happens now that you have the ASD diagnosis. What do you need to be aware of and how can you meet your child’s many needs? Hopefully, this information will help you to get your child into the therapies he or she needs, manage meltdowns and support them to manage their own behaviour and emotions.

It’s important to note that all behaviour is communication. As a general rule children will only ask for the attention they need. Some children need more than others and the chances are that if you feel your child requires an assessment (with the aim of a diagnosis), you’ve encountered some pretty extreme behaviours.

I like to sometimes think about children’s behaviour as them speaking their own language. In neuro-typical children (those without special needs) it can be relatively simple to understand their language as they can learn how to speak your language and therefore communicate their needs more easily. However when you have a child on the spectrum the language can be completely foreign and much more challenging to understand. Children on the spectrum often don’t have the developmental capacity to speak (or even understand) your language, which makes it difficult (if not impossible) for them to learn and communicate in a language that you can understand. It therefore becomes necessary that you learn their language (emotions, signs and triggers), and how you can meet their needs.

Learning their language

To learn your child’s individual language (every child on the spectrum speaks a slightly different language) it can help to look at some of the issues he or she may encounter in daily life:

Sensory issues

It’s common for children on the spectrum to have difficulty with sensory overload. Noises, sights or smells can be overwhelming and painful. Lights and colours can be too bright, sounds too loud, perfumes and odours too strong and so on. When hit with so much data they can become overloaded with information and their brains cannot process it all in a way that makes sense to them.

Academic issues

The mainstream school environment can be a challenging space for a child on the spectrum. Their brains are bombarded by an overload of sensory information. They are required to sit still for long periods and focus on deciphering a lot of information. There are lots of other bodies around them, creating noise and chaos. They are asked to follow instructions and perform tasks that their brains aren’t capable of processing quickly. Trying to cope in this environment can be overwhelming and exhausting and during the school day there is little opportunity for down time to reset.

Social issues

Children on the spectrum regularly have difficulty interacting socially. Reading faces and interpreting expressions can be impossible. Other children can invade personal space. Knowing how to respond in a socially acceptable manner is difficult. Taking turns and sharing can often be a foreign concept. Formulating words and having a two-way conversation can be virtually impossible when the ASD brain requires extra processing time. Maintaining eye contact can be difficult. Social interactions can be incredibly challenging to a child on the spectrum.

Active brain issues

The brain of a child on the spectrum is often running on overdrive. It can be difficult for your child to turn their brain down and get their mind chatter to be quiet. This may affect the ability to focus, listen, pay attention, or to sleep. It can produce feelings of overwhelm, frustration or irritability, amongst other things.

Anxiety issues

Anxiety is often the ongoing companion for a child on the spectrum. They want to please and do the “right thing” but the overactive brain and overload of sensory information creates an environment that is difficult to cope with. Worry is a natural consequence of wanting to get it all right but being unable to bring it together.

Is it any wonder then, that a child with an ASD diagnosis often experiences meltdowns? The overloaded brain cannot cope with the excess of data it is asked to process and the result is an explosion of energy and emotion that the child simply cannot suppress. However, with training, strategies, support, natural development (maturing) and plenty of love and nurturing, things can get better. It might feel like I’m minimising the difficulty of these tasks but I am fully aware of how difficult this process is. It’s a very tough ask and your child’s behaviour can be overwhelming for you. This is why I’ll be devoting an entire article on how you can remain sane through the process toward the end of April.

In the meantime, I want to support you in being able to read your child’s behaviour and interpret the language being spoken. Each child will have their own, very individual language so much of your ability to learn it will be to try some things and see what happens. Trial and error. It can feel like it’ll never happen. However even having the list above can be helpful in figuring out what’s going on for your child. If you understand how exhausting it is for your child to keep it together during school hours for example, you could try implementing a routine to provide time for peace and calm and see how it goes.

When your child is overwhelmed and feeling chaotic, they need time and space to find peace. If you join them in their chaos they won’t find what they need, so it’s important that you remain calm and strong so they know how much room they have to move. It’s essential that you have the support you need in order to hold that space for them.

Helping you to speak your child's language

Therapies

Consider a variety of therapies for your child. This may include speech therapy, occupational therapy, psychology and so on. Professionals in these areas can help by supporting your child with practical strategies to become self-aware and manage their own emotions. They can also provide you with education on how your child’s brain processes information, and give you some strategies to support your child. Schools often have access to some of these professionals so you may be able to utilise these services. Availability will depend on staffing and funding so ask your school. Also consider the specialty areas of the professionals available, especially regarding psychology. You will want to find people who have experience with children on the spectrum. Don’t be afraid to ask questions to check whether it will work for you and your family’s needs.

Calming activities

Your child (and the rest of the family) will need access to plenty of activities that will promote and encourage peace and calm. This may come under several categories, so consider the following:

Physical exertion 

Sometimes your child will need to burn off excess energy. Running, ball games, trampolines, climbing, swimming, playing in the park, amongst others, can help with this. Be flexible and go with your child’s natural interests, but you might like to avoid team sports as these add expectations of social interactions that would test the ability to cope.

Down time

This can include anything from arts and crafts, screen time (games on computers, iPads, video consoles etc), lego, puzzles and so on. Anything that allows your child to explore their natural interests and retreat into a space away from the stresses of the outside world.

Grounding time

This can be playing in the yard, swimming, gardening and so on. Anything that helps your child connect with the natural elements (earth, water, sunlight etc) in order to feel grounded and centred. Be guided by activities that your child is naturally drawn to when stressed.

Sensory equipment 

Sensory equipment supports your child to self-soothe and create calm in the midst of chaos. There are many options available, such as worry beads and weighted blankets. You can access them from a number of sources, including the organisation in your state devoted to the Autism Spectrum Disorders (eg, Autism Queensland). You may also find them via other websites. A google search is likely to reveal a number of options. Informal networks with other ASD parents can be an invaluable resource for this type of equipment, so don’t underestimate the value of support groups (online and face to face) and parent groups. Your team of professionals will also be able to suggest options for you that may work.

Safe Space

This is an area where you child can get away from all the sensory data they’ve been bombarded with all day. It gives them a chance to decompress, ground themselves and regain their energy. It can include some of the sensory equipment mentioned above, like weighted blankets, so your child can hide or wrap themselves up in order to rebalance and regain their equilibrium. Some schools support their ASD children with this, which I will cover in greater detail next week when we discuss school related issues.

Routines

Children on the spectrum often do well with daily routines. It supports them in knowing what to expect from moment to moment. A visual timetable and giving notice to transition between activities can help them to move from one thing to the next. A word of warning is that you run the risk of a meltdown when those routines are unexpectedly interrupted. Be guided by your child and the team of professionals around you.

Informal Support Team

The value of family and friends to get you through the tough times is incredible. I’m including support groups in this because the experience of other ASD parents who have been (and are) there can provide you with incomparable knowledge and information to support your family. People who can listen without judgement, allow you to offload and give you a break away from the kids can also be helpful. Be aware that not everyone understands what it’s like and may say unhelpful things.

Professional Support Team

Paediatricians, psychologists, speech therapists, occupational therapists, teachers, teacher aides, the carers organisation in each state, and so on. These people can all provide invaluable support as a part of your child’s team. Information and education on the facts of ASD, helping your child to become more self-aware and self-managing, and a place for you to offload when you feel overwhelmed. Your child is at the centre of that team, but you are its leader. As the parent you know your child best. You are just as much of an expert as the paediatrician, the psychologist or the teacher. You have the right to ask questions, to understand what’s going on, and to feel like you’re a valued member of that team. If you feel like something isn’t right you have the right to do something about it.

-Get to know the signs of your child’s stress. Clenching hands, pacing, muttering to themselves. When you see the early signs of stress try implementing strategies early. This will ideally promote calm and prevent meltdowns.

-Spend positive time with your child. Know what sparks their excitement. Even if for short periods of time, it’s important that your child experiences fun and relaxed time with you.

-Take care of you. As your child’s parent it is important that you can be the solid, strong place for them to fall. In order for you to do this, your care needs to be the first priority. You won’t do your child any favours if you are over tired, stressed and irritable. In my work with carers I have seen many parents in this state and it makes it much more challenging to help your child manage their emotions when yours are chaotic too. Don’t be afraid to seek professional support so you can debrief with someone. Your carers organisation find you a counsellor to talk things out. 1800 242 636.Take a regular break where possible. If you don’t have backup to step in, try accessing a respite service if it’s available in your area. If you don’t know how to access this support try making contact with the carers organisation in your state. They should be able to connect you with an appropriate service and you can contact them on 1800 242 636. Your child may find it difficult to adjust to this arrangement at first, but it’s important that your needs be met in order for you to meet your child’s needs. You can’t do this without time for you.

-Take a regular break where possible. If you don’t have backup to step in, try accessing a respite service if it’s available in your area. If you don’t know how to access this support try making contact with the carers organisation in your state. They should be able to connect you with an appropriate service and you can contact them on 1800 242 636. Your child may find it difficult to adjust to this arrangement at first, but it’s important that your needs be met in order for you to meet your child’s needs. You can’t do this without time for you.

-Funding support. Therapies and equipment can be expensive, especially when you need to pay for private services (rather than through the public health and education systems). You may be able to access some therapies through the specific Medicare services. Speech therapy, occupational therapy and psychology are some of these. Ask your therapist if they are registered to provide these with Medicare and what you need to do to receive them. The therapist can use specific Medicare item numbers and you may need a referral from your GP. Your carers organisation should know how this funding works or at least know where to direct you to find out. You could also ask your paediatrician or General Practitioner, but be aware that not all of them know how it works. This site can help you find out what you may be eligible for in terms of funding http://www.autismawareness.com.au/financial-support/ . Sometimes there may also be some one-off funding opportunities through different providers. Lifeline, for example, sometimes has opportunities to apply for grants to receive money to pay for services or equipment. If you make friends with some of the service providers in your area and let them know you’re interested in opportunities like this, you may get lucky. They can be rare though, so when it happens it’s like winning the lottery.Early Intervention – If your child is under 6 years old you may be able to access up to $12000 for therapies and early intervention strategies. The earlier you apply for this funding the earlier you’ll be able to get professional support for your child. Ask your GP, therapist, paediatrician or carers organisation for information. The more experience any of these people have with ASD the more likely it is that they will be aware of this funding.

-Early Intervention – If your child is under 6 years old you may be able to access up to $12000 for therapies and early intervention strategies. The earlier you apply for this funding the earlier you’ll be able to get professional support for your child. Ask your GP, therapist, paediatrician or carers organisation for information. The more experience any of these people have with ASD the more likely it is that they will be aware of this funding.

These suggestions will hopefully help get you started. If you feel lost and confused about where to find support, or need help navigating one or more area on this list, the carers organisations around Australia should be able to help you figure things out. You can find their websites through Carers Australia at www.carersaustralia.com.au and their toll free number will get you through to the head office of the organisation in your state. They also have a Carer Advisory Service, where you can ask questions and be directed to information that might be helpful for your family’s needs. This could be information and resources on the Autism Spectrum Disorders, respite services, funding options, support to find services with your child’s school (which we will cover in depth next week), or simply someone to talk to, the carers organisation is there to help. The phone number is 1800 242 636.

Autism Australia has a great website full of information and resources about Autism and how to navigate having a child on the spectrum. Check it out here.hwww.autismawareness.com.au/.

Keep an eye out next week for information about how you can navigate the school systems and the following week we’ll talk about how you can make yourself a priority in your life.

Ali Bengough is currently studying her Masters degree in Applied Psychology at the University of Queensland. She has been working as a counsellor for ten years and loves what she does. She is passionate about helping people find their purpose and overcome the barriers that hold them back from living their dreams. She blogs over at The Mindset Effect, where she writes about anything related to the way we think and feel. This is complimented by aFacebook page and Twitter account. She loves to hear from her readers and welcomes feedback on what they would value reading about. When she graduates, Ali plans to use her blog to launch her business, creating a comprehensive site offering a variety of individual sessions, group workshops, online programs and other resources. She is currently in the process of writing the first of many books.