As a professional that has been in the field for many years, I can tell you now, you are the true expert in your child’s life and his or her journey through these different phases that are ultimately magnified once you receive a diagnosis.
At AIMS Global we work with parents on a daily basis and one of their first concerns is almost always that they don’t seem to have a tool to dissect through all the information they are receiving. Sometimes they feel that there is not enough information given to them by trusted professionals, but most of the time, they do their own research and feel that they don’t know what therapy to choose, how much of it and if it’s “trustworthy”.
This blog should be seen more as a talk or an explanation of the general consensus of the parents we have worked with. We work with parents on different times in the journey of ASD. Some have recently received a diagnosis for their child and feel a bit overwhelmed with all the information they are receiving, others are waiting for a diagnosis and feel frustrated that no one seems to be listening to their cry for help for their child and others have been on this road for longer and might have become a bit cynical toward “professionals” in general.
Fortunately, we take a very personal approach and want to get to know not only our clients’ main concerns for their child, but also their hopes and dreams. We want to understand how to work with each child in the way that works best for him or her. To connect with the entire family and offer support in any situation. Please don’t get me wrong – this is not meant as a marketing video to hire an AIMS full-time live-in therapist, but merely an honest account of what we have seen has made a difference in the lives of the entire family and not just the life of the child we work with.
A bit of history for anyone that have never heard of us – Nanette Botha and I started working in the field many years ago, first as ABA (Applied Behavioral Analysis) therapists and then opened two early intervention centers. Through the years we have learnt (and are still learning) in this field. Just as a sidenote here: if any professional tells you that they know exactly what autism is or how to “manage” some of the characteristics or even state that they can “cure” autism, please add a cynical filter as soon as possible. Nanette and I then started speaking more to adults diagnosed with ASD and this is when we realized how little we actually knew. It seems so easy for the parents we work with to show humility and let go of their ego to listen and take in advice and suggestions from us, “professionals”. I take my hat (should definitely wear one more often) off to you as parents for becoming vulnerable for the sake of helping your child in any way possible – emotionally, financially, socially, you name it. As a professional I can honestly and with some self-blame and shame say that it took me longer to listen, really listen to people that are actually autistic. The people that matter – or should matter if you are in the field of autism.
So, my first tip or suggestion would be to connect with autistic advocates. Now, be aware that like many of our children, some adults diagnosed with ASD can be quite direct and sometimes lack a tiny bit of tact when they try and educate others. You have to have a thick skin, but I’m sure as you are already on this emotional journey that you have learnt a few tricks and improved your coping skills to handle this. Some parents even find it refreshing to meet some bluntly direct adults diagnosed with ASD as they can relate so well having a child that will tell them exactly what is wrong with them before 6am!
We started AIMS which stands for Awareness, Interests, Movement, Sensory support system. The beauty in the approach is that it’s interest-based, so our children don’t feel like they are being forced to learn. We can say that with absolute certainty, because they are smiling, relaxed and they are actually learning. One of our philosophies: happy children learn naturally!
Another pillar of the AIMS support system is that we teach concepts, instead of drilling independent step-by-step targets without meaning in our children. They understand (as much as we can show them) why they are learning about a specific topic.
There is a huge focus on emotional coping strategies that we help our children reach with sensory input, movement breaks and becoming more self-aware. We then focus on self-regulation to help our children understand that they can firstly become aware of their own needs (emotional states, sensory needs and pressure points if you will) and then secondly that they can regulate this independently before a meltdown occurs. That’s the ultimate goal – for independence in communication, self-regulation, life skills and so on.
We truly believe that if a child has a way of communicating, whether that mode is through exchanging pictures, using a speech-output device or requesting in detail expressively; and if they become self-aware and is able to self-regulate, that they can learn naturally, independently with less support.
Does that sound too good to be true again? Maybe. Again, the point of this blog is not to convince anyone to hire an AIMS therapist – rather we wanted to give our “secret” away. Here is what we have learnt:
- Anyone can work with any child, whether or not they have a diagnosis of ASD (any form), but they have to be able to connect to children in general, be loving and work with the child, instead of against him or her.
- You can hire someone that is not trained (please remember we are not advocating unsafe child protection here – merely stating that most parents have a Nanny or Helper that usually is amazing with children and have many years more experience than a trained therapist). You can give them the tools to work with your child by providing basic training and asking a professional to help set-up a program. Supervision is always important for any program, but again – it doesn’t need to be a massively expensive supervisor that has to fly out to see your child and your child only for thousands of dollars! It can be done online – we have done this with great success, for many years now.
- You know what your child needs. We understand you will typically get a referral from a pediatrician for 40hrs of ABA per week, 1-2 sessions of Speech therapy (although your child is not speaking yet), Occupational therapy and possibly a suggestion to send them to school at age 3yrs old. We also know from what we have seen with our parents is that they follow these suggestions or referrals for about 1-2 years and then they see that their initial feelings might have been right – it is too much for any child to do. Our parents usually report a cyclical effect, where they saw some progress and then it seemed to plateau. The most recurring and concerning remark that we receive from parents is that their child never truly seemed happy participating in this amount of therapy. Yes, sure he or she enjoyed the little sprouts of “reinforcement” they received, but one parent said it beautifully: “she was happy for her treats, but it was because she didn’t know that just by being a child those treats should have been given for free and not for a handclap or two jumps”.
- What we have noticed during all the years of therapy, schools, social groups and live-in therapy is that children who are in a safe, calm and natural environment will learn to live comfortably in their own skin, whereas children who have been trained to be different than who they want to be will always feel “not good enough”. Unfortunately, this shows in a variety of negative ways when our children grow up.
- We would advise any parent to look for support that:
- Is focused on a connection with your child
- Can help you with your entire family and not specific “therapy hours”
- Make sure your child has enough breaks in between his or her “therapy hours” and during these. He or she should definitely not be working for water or food when he or she is thirsty or hungry. We don’t see short bursts of “reinforcement” time beneficial to our children, but this is a personal belief. We rather work with our kids on a motivating activity (for example if your child likes puzzles, we will build a puzzle with them from the start) and bring in concepts to work on (whether these are academics or conversational). We don’t work with our children to receive one puzzle piece for every correct answer.
- Trust your gut! If you feel the therapy is not making your child happy, reassess if it’s worth it. We understand that it’s scary when people tell you “early intervention is key”, but from our experience children learn into adulthood. What really is the rush? They also learn a lot faster when they are able to communicate, become more self-aware and can regulate their system more independently. Another sidenote here: we are very weary of professionals that refuse to teach a child to say “no” as they will then “overuse” this. We believe our children should ALWAYS have a way of refusing. Besides – why do we want to force anyone to complete activity after activity that they despise?!
- And lastly, if you need honest advice, we are always there to help, without trying to convince you that AIMS is the best (we are quite confident individuals so we don’t need to boast, haha). Send us an email and one of us will reply – either Nanette, myself or a senior therapist: firstname.lastname@example.org
Thank you for listening and definitely have that glass of wine or another break, like a relaxing book or bath. You deserve it more than anyone!