So, your child has just been identified as autistic or maybe you have known for some time but have felt overwhelmed by where to start with therapies. I clearly recall that feeling. There was advice from the psychologist who completed the evaluation for T as well as from friends. I read everything I could find about the best and worst therapy options for autistics children and all I felt was more confused. I felt that the longer I waited to make a decision the more I was failing my child. I have learned a lot about the best way to support our son over the past four and a half years. I’d like to share with you what I have learned and what I wish I had done differently. Hopefully you can use my experience and avoid a few of the mistakes I made.
Before you begin, consider the lens you are using.
Are you thinking about how to make your child look like their neurotypical peers?
Are you thinking about how therapies will make your child’s life happier or are you thinking about how it will help others feel more comfortable?
I certainly fell into the latter trap. I desperately wanted my child not to be misjudged in public settings. I was sensitive to how I thought others were judging me and my parenting according to what they saw my child doing and how I was responding. This can be very hard in the early days of accepting what it means to be parenting a neurodiverse child. If, like I was, you are struggling with feelings of guilt for how you are failing your child, take some time to work through your feelings. It is important to have a clear idea of what you want to provide for your child without the lens being clouded by what you think others expectations are?
Beginning the search
Step 1 – Health Insurance
The first step, certainly if you are in the USA, is to determine what kind of coverage your health insurance provides if you are fortunate enough to have it. If you do not have health insurance what other ways can you find financial support? Are you eligible for social security income (SSI)? Are you covered through Medicare, medicaid or Tricare? Is there a grant you can apply for? Find more information here.
https://autisticadvocacy.org/wp-content/uploads/2015/07/Health-Insurance-and-Medicaid-Coverage-for-Autism-Services-A-Guide-for-Individuals-and-Families-7-9-15.pdf
Step 2 – List
List your child’s challenges. This may initially feel like an impossible task. You might feel like there are challenges in every area of their day. Start with the most significant difficulties and work from there. Think ‘what makes my child consistently unhappy or frustrated?
If I could go back and do this the list would look something like this. It is a mixture of observed behaviours and assumed feelings. T was 4 ½ years old at the time he was identified as autistic and was not able to name his feelings or communicate what he needed in words.
Upset/angry/frustrated when plans change unexpectedly
Screams when sibling walks in room
Very upset or angry when losing a game, throws game, hits, screams
Appears to want to join peer games but doesn’t seem to know how
Frustration when rushed to finish an activity
Frustration when asked to stop an activity before completion
Hides to avoid getting in car at home
Spins endlessly
Hits parents when asked to stop an activity or negative behaviour
Refuses to go to toilet leading to constipation and discomfort
Requires feeding in order to eat enough or finish a meal
Puts too much food in mouth and gags
‘Squirrels’ food into cheek rather than swallowing
Throws objects at people or generally around the room when angry
Yells at people at the store when they open a door
Insists that doors be closed before continuing into a room, building
Shouts at peers when they are on the swing and he wants a turn
Refuses to finish on swing when other child has been waiting
Does not follow directions especially when more than one at a time
After making your list look back and remove any that do not impact your child’s happiness or emotional or physical health. Leave any in the list that negatively impact others not that simply make them feel confused or a bit uncomfortable. Here is my updated list
Upset/angry/frustrated when plans change unexpectedly
Screams when sibling walks in room
Very upset or angry when losing a game, throws game, hits, screams
Appears to wants to join peer games but doesn’t seem to know how
Frustration when rushed to finish an activity
Frustration when asked to stop an activity before completion
Hides to avoid getting in car at home
Spins endlessly
Hits parents when asked to stop an activity or negative behaviour
Refuses to go to toilet leading to constipation and discomfort
Requires feeding in order to eat enough or finish a meal
Puts too much food in mouth and gags
‘Squirrels’ food into cheek rather than swallowing
Throws objects at people or generally around the room when angry
Yells at people at the store when they open a door
Insists that doors be closed before continuing into a room, building
Shouts at peers when they are on the swing and he wants a turn
Refuses to finish on swing when other child has been waiting
Does not follow directions especially when more than one at a time
Unable to recognise when he needs to go to the toilet
Does not go to the toilet when asked
Has many accidents/becomes constipated
Presses on eye and puts head on side when watching tv and when thinking
Step 3 – Categorise
Try to organise the list into categories as best you can. Some things on the list may go into more than one category.
I feel able to support at home without outside support
Honestly, when T was 4 ½ I did not feel equipped to help my child without outside support. I see now how much I was doing on a daily basis to support him but in the middle of the hardest times I felt too overwhelmed to recognise this.
Speech Language Pathologist (SLP)
Upset/angry/frustrated when plans change unexpectedly
Very upset or angry when losing a game, throws game, hits, screams
Appears to wants to join peer games but doesn’t seem to know how
Frustration when rushed to finish an activity
Frustration when asked to stop an activity before completion
Hits parents when asked to stop an activity or negative behaviour
Throws objects at people or generally around the room when angry
Yells at people at the store when they open a door
Shouts at peers when they are on the swing and he wants a turn
Refuses to finish on swing when other child has been waiting
Does not follow directions especially when more than one at a time
Occupational Therapist (OT)
Puts too much food in mouth and gags
‘Squirrels’ food into cheek rather than swallowing
Upset/angry/frustrated when plans change unexpectedly
Very upset or angry when losing a game, throws game, hits, screams
Frustration when rushed to finish an activity
Frustration when asked to stop an activity before completion
Hits parents when asked to stop an activity or negative behaviour
Refuses to go to toilet leading to constipation and discomfort
Throws objects at people or generally around the room when angry
Yells at people at the store when they open a door
Shouts at peers when they are on the swing and he wants a turn
Refuses to finish on swing when other child has been waiting
Unable to recognise when he needs to go to the toilet
Does not go to go to the toilet when asked
Has many accidents/becomes constipated
Psychologist
Screams when sibling walks in room
Very upset or angry when losing a game, throws game, hits, screams
Refuses to go to toilet leading to constipation and discomfort
Throws objects at people or generally around the room when angry
Yells at people at the store when they open a door
Shouts at peers when they are on the swing and he wants a turn
Unable to finish on swing when other child has been waiting
Unable to recognise when he needs to go to the toilet
Playdates and classes
Upset/angry/frustrated when plans change unexpectedly
Very upset or angry when losing a game, throws game, hits, screams
Appears to wants to join peer games but doesn’t seem to know how
Shouts at peers when they are on the swing and he wants a turn
Refuses to finish on swing when other child has been waiting
Parenting coach
Screams when sibling walks in room
Does not follow directions especially when more than one at a time
Upset/angry/frustrated when plans change unexpectedly
Pediatrician / Doctor
Unable to recognise when he needs to go to toilet
constipation and discomfort
Puts too much food in mouth and gags
Presses on eye and puts head on side when watching tv and when thinking
Unsure how to support
I’m sure I would have had some of the above items in this area but with hindsight I know where to find support for the areas listed and don’t remember which I was unsure of. I’ve come a long way 🙂
Classes/ groups that would help support your child’s needs
At the time T was in an outdoor preschool. We felt that moving on to a PreK program to help ready T for a more mainstream classroom was the best option. In hindsight this was not a good choice. He had a mostly difficult year. He is now in an alternative school and it would probably have been better to have done another year at the outdoor preschool before going straight to this school for Kindergarten. But….hindsight. We did our best at the time.
We spent time with another family with similar parenting practices. The mother in this family had known T since birth and was able to remain calm and patient when he was struggling. I felt comfortable having her care for T and so we exchanged babysitting to give one another some ‘me time’ as well as to provide social time for our kids. She has always been a huge support for both me and T.
Step 4 – Prioritise
Is there one challenge in particular that would be huge to work through? For us working through T’s aggression and anger in various situations was most important. This had a huge impact on his own happiness as well as that of his siblings and parents.
Is there one kind of therapy that will support many of the difficulties? As you can see in the lists above there are a number of challenges that I felt would be supported by multiple therapies.
Step 5 – Decide
How do you actually choose from hundreds of possible providers? If you have health insurance restrictions you need to to take that into account. For example, do you have any out of network coverage or do you have a deductible to reach? Call your insurance company to see if they have a list of providers in your area.
Ask around. If you know other parents who have taken their children to similar therapists ask for referrals. Ask parents at playgroups or classes your child attends. I think most people are very happy to share their positive as well as negative experiences. In my experience other parents want to help other parents. Ask your child’s teachers, nanny, babysitters or others who spend time with children. Check with your child’s doctor or other professionals who have interacted with your child. Join facebook groups and ask for references there. Keep your ear out everywhere you go! It is amazing the people you can end up talking to in places like the supermarket check out or in a children’s clothing store who can make suggestions.
Once you have started at a therapy location providers can often give referrals. The waiting room at any child therapy location is a fantastic place to get honest feedback from other parents about their good and bad experiences. I found the conversations I had with other parents of special needs kids so validating and I have learned a lot from parents who have been traveling the same road for longer than me. I feel now that I am able to offer ideas to parents who are in the overwhelming early days of an autism journey.
Use Your Instincts
Use your instincts
LISTEN TO YOUR MAMMA GUT! If you start with a therapist and it feels wrong listen to yourself. You must advocate for your child. I have had to build this confidence in my own parenting. Looking back there are a couple of bigger and many small mistakes that I made when I ignored my intuition. I now listen when I hear that nagging question in the back of my mind or feel unsettled in any way related to therapies, education, friends etc. Remember that just because a trusted friend has found a therapist a great fit for their child does not mean that the fit will be right for your child. The therapist could be kind, caring, knowledgeable and even a good fit for your family’s values but if your child does not want to do the therapy think about why that is.
Initially I had felt that a social skills group would be a good start for T. I took him for an assessment to a location where I was informed there would be a social group available for him. I felt uncomfortable as soon as we arrived at this location. It was chaotic and noisy and the person at the front desk seemed uninterested in helping me when I arrived. The person doing the initial intake appointment was not natural with T and told me multiple times that T should be careful with the toy he was playing with in case he broke it. After the intake they told me that T was too young for their social groups. This was very frustrating as I had told them his age before the appointment. This experience taught me to have a list of questions to ask any potential providers before making the effort of taking three young children to an appointment or paying unnecessary money. Lesson learned!
After finding that social groups for his age range were few and far between in our area we decided that Occupational Therapy could help T with his ability to self regulate and Speech Therapy could help him learn how to communicate his needs and feelings.
I searched, within providers covered by insurance, for a location where I could find both therapists at the same location. I was much more careful this time and asked more questions before setting up a walk through of the site so I could get a feel for if this would be a good fit. Do not underestimate the reception staff! They so often set the tone for the whole place. They were so friendly and responsive, willing to calmly answer all my questions over the course of multiple phone calls. We ended up working with two OTs and an SLP as well as doing a few years of summer friendship groups (a social skills program that T loved). I was encouraged to stay with T in his sessions for as long as he felt comfortable and eventually was able to drop him off and grab a coffee and a few minutes to myself a couple of times a week.
Knowing when to pause or stop therapy
Knowing when to end or pause therapy.
There comes a time, even with the best therapy situation, when it is time to stop, switch providers or take a break. The reasons for this are varied. Here are a few reasons to consider.
- Your child has learned all they need to from a person or at that time in their development.
- There are more pressing concerns and your child needs to work with a different type of therapist. You need to consider here how much is too much. Just like not over scheduling a child with too much extra curricular activity it is important to balance the amount of therapy with time for your child to play and explore their special interests.
- Your child has started resisting the sessions. Here you think why? Is it that they have reached a point where they are learning a difficult set of skills? Are they bored? Is there something else that is causing them to be uncomfortable such as a new person in the setting or some new equipment that they are using and don’t like. Talk to the therapist and ask if there was a particular incident that caused your child to be upset and see if that sheds any light on the situation. Is this a one time problem or is it ongoing?
- The scheduling is becoming too stressful. We ended up ending T’s OT sessions not because he was unhappy or not making progress but because it clashed with his school hours and was making for a stressful morning once a week getting to therapy and then transitioning to school. We were fortunate enough that his school has on site OTs and so we switched to doing his sessions at school.
One last word about therapy for your child.
Always stop and ask yourself why are you choosing this type of support? Is it to make you feel more comfortable? Are you trying to change things about your child that make your child who they are? Stimming behaviours such as arm flapping and jumping or vocalising can draw attention to your child from people who do not know them or understand and accept neurodivergence. This can be hard as a parent because you want people to accept your child. However, if you are trying to stop your child from doing things that bring them comfort or that are enjoyable or reduce their anxiety you are doing your child a disservice. You are in fact not accepting your child for who they are. If they are not hurting others then they should not be forced or even encouraged to stop.
The plan is to find a team who can support your child in developing skills to help them. People who will care for your child so that they can be happy and healthy.
Thank you for this very comprehensive ‘map’ for a way forward. It has explained many things to me. It helps to have guidance as to each step.
Thanks Anne, I am so glad that it is helpful. There is so much to navigate so I’m very happy to pass on my knowledge and help others to get to the right support team faster. It he as made a huge difference having a whole team to help us support T.
Wonderful posts. We just had our “lightbulb moment” a few months ago, and are in the overwhelmed phase. Please keep posting!