Where Do I Start?
Where Do I Start?
Finding treatments and therapies to address specific autism-related problems
Many of our members, as well as numerous parents, clinicians and researchers throughout the world have found that addressing underlying problems in children and adults with autism, including treating comorbid or underlying medical problems, can lead to improvements in a wide range of symptoms, including sleep, irritability, aggression, and self-stimulatory, repetitive and obsessive behaviours. Some have observed improvements in the core symptoms of autism including in some cases, a complete recovery from autism and subsequent loss of autism diagnosis.
Treating the child, NOT their autism label
1. Assess the situation
If interventions are to be successful, you must first take some time to figure out what your child’s specific problems and difficulties are. Ask yourself which areas need tackling, and in what order, for your child to have improved quality of life, better executive functioning, self-care and life skills. Assessment will include careful observation and recording of behaviours and symptoms. You perhaps might ask other adults to do the same. You may seek testing through health care professionals.
2. Research interventions – why no single intervention for ‘autism’ will be right for EVERY child
When trying to find right help for your child it is best, for once, to ignore the diagnosis of autism, or any other behaviourial diagnosis for that matter. This is important because diagnostic labels are widely encompassing characterizations that say little about the specific difficulties your individual child is facing in their everyday life. For example, a person with a diagnosis of autism might have fluent or even age-advanced speech, but very poor social skills. Another individual with the same diagnosis might actively seek contact and company of others, but be unable to communicate or follow the pace of neuro-typical interaction and be unable to join in with peers. Some individuals with autism diagnosis are very advanced academically, while some are severely impaired and unable to learn alphabet or understand numbers. Some people with autism do not appear intellectually disabled, but will struggle with poor attention or memory, which badly affects their academic performance.
If you have met a number of people with autism you will know that aside from a wide range of severity of core symptoms, most will also struggle with other autism-related problems like anxiety, challenging behaviours including aggression and self-harm, sensory integration issues, sleep difficulties, severe executive dysfunction, obessesive compulsive behaviours, and more. In addition to the wide range in core areas of an autism diagnosis, there can be a wide range of other challenges.
It goes without saying that diagnosis or not, everyone is an individual – and needs to be treated as such. Research and lived experience have shown that autism is not a homogenous condition; therefore, it is not surprising that interventions will have different results for different people.
Our charity is run by parents and we value parent experience. We encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.
3. Dig beyond surface symptoms and diagnostic labels – everything is caused by ‘something’!
Always remember that the diagnosis of autism is given on the basis of surface symptoms alone. Having a diagnosis of autism does not explain anything. A child or adult will be given a diagnosis of autism because they have communication difficulties or restricted and repetitive interests and behaviours severe enough to be considered a disability–not the other way around.
In other words, autism is only a descriptive word, it does not cause those symptoms but is those symptoms. The same is true for comorbid conditions common to autism – none of these are caused by the label of autism. Rather, all the symptoms and difficulties that an individual has will have an underlying reason, and that underlying reason is not ‘autism’. Those underlying reasons can be of biological or psychological nature, or both.
To illustrate this point, let’s consider some examples of biological reasons for challenging behaviour common in autism:
If an individual with autism is having aggressive, irritable, oppositional or obsessive behaviours, those behaviours will not be because of his or her ‘autism’. As we have already established the term autism is just a shorthand for a list of diagnostic symptoms and therefore cannot be the cause of anything. Instead, those challenging behaviours will be a result of an underlying problem. That problem could be medical: undiagnosed seizure activity in the brain can cause aggressive and self-harming behaviours, and so can pain from conditions such as reflux, indigestion, and ear infections, making it very important to always rule out medical conditions especially when symptoms are sudden-onset or suddenly change in intensity.
Another perspective on challenging behaviours can focus on sensory processing dysfunction. The majority of children and adults diagnosed with autism suffer from sensory processing dysfunction–the difficulty of processing and integrating the auditory, visual or tactile information coming from the environment.
When a person is not able to process incoming information from the environment in ‘real time’ (or at the same speed as a neurotypical person) it can be a true struggle understanding and reacting to normal speech, or to signals and gestures coming from other people. To an individual with such sensory processing problems the world, and the people in it, can appear too fast, too loud, too jarring, overwhelming and ultimately intolerable.
This inability to process and understand what others are saying or doing in real time can in turn cause the individual to become anxious and avoidant when amongst peers, and to seek solace in obsessive and repetitive behaviours, or alternatively to become frustrated and aggressive towards themselves and others
4. Look at your child’s behaviours as possible symptoms
Ask yourself about the issues that appear most significant for your child. Does your child crave/exclude certain foods? Engage in certain unusual behaviours (chewing shirts or licking non-food items, for example)? Have noticeable physical symptoms like red ears, rashes, eczema, pushing on the gut, very dry hair, excessive ear wax, white tongue, spinning, unexplained laughing, irregular bowel movements? Have erratic or abnormal sleep patterns? Have obvious sensory issues (covering ears for example)? Does your child become aggressive at certain times? Avoid certain places?
Often, speaking with other adults who are involved in your child’s life will help you to remember or notice things that might otherwise be overlooked. You need to look at the situation with fresh eyes and with a determination to discover. By documenting as much about your child as possible, you will find patterns that will help you make sound decisions about treatment. This information will also help any health care practitioner you choose to work with.
5. Find the most suitable interventions and practitioners
Once you have started observing your child carefully to gather information, you will be better enabled to seek out interventions and practitioners. Our publication ‘Treatments and Therapies for Autism’ will provide you with a quick overview of just some of the available interventions, but those do not constitute recommendations – always be sure to do further research and ask deeper questions to establish if an intervention is suitable and appropriate for your own child.
Practitioners include medical doctors, nutritionists, occupational and sensory therapists, speech and language therapists, acupuncturists, homeopaths and other alternative therapists.
We suggest parents start with finding a knowledgeable medical practitioner, with experience in treating the health problems of children on the autistic spectrum. Such practitioners will assess your child’s presenting symptoms and help investigate and rule out possible underlying causes. They give guidance and impart knowledge based on clinical experience, and generally help parents to treat their children safely and with greater efficacy. Many parents treating their children work with one or sometimes more practitioners.
Dear Thinking Autism,
Just to let you know that information you provided had a positive outcome …The introduction of this intervention by our doctor (thanks in great part to information collected and passed on by Treating Autism!) meant that in just five days our child showed a marked improvement in behavioural responses, a reduction in OCD rituals and rigidity, reduction in oral defensiveness enabling new foods to be introduced on their first attempt. Also lately we have seen a reduction in over responsiveness to everyday occurrences including phobias of harmless things i.e. flies, shop freezers. We are now able to take our child on shopping trips, to new activities without elaborate rehearsals and be more spontaneous, including giving them surprises as treats, going to various busy family fun activities and joining in the fun including a birthday party. … It was integral that we were able to evidence validity for this intervention use in our child. That was only possible through the documentation and referencing you provided. This intervention has given the whole family a better quality of life and more social opportunities to help develop our child, giving them the opportunity to just be a child like any other! Thanks and Best Wishes, MA
(feedback from a parent)
How to know if an intervention is actually working
Keep track of important details
Other than enlisting help from a health care professional, the single most important method of selecting treatments and assessing their efficacy is to track key aspects of your child’s life. Some people keep a diary, others take advantage of apps such as Autism Tracker, which can provide you with useful graphs of the data you input. It is best to start tracking before you begin treatments, although it is never too late to get into this highly useful habit. Track what you think matters most in regard to your individual child. Many people track things such as food eaten, happiness, sleep, bowel movements, where and how time has been spent, energy levels, efforts at communication, skills gained and much more.
It can also be enormously helpful to videorecord your child at regular intervals. The ATEC can track improvements over long periods of time. ATEC stands for Autism Treatment Evaluation Checklist and was developed by the Autism Research Institute. It is a bit of a blunt instrument, but often parents find it helpful to complete the ATEC prior to beginning a major treatment. Other parents use it more as a way of periodically evaluating overall progress. It is free and easy to use.
Gathering autism information and support is an on-going task!
Tackling your child’s autism-related challenges will take knowledge, expert advice and support. Below you will find some recommendations for gathering information and support from different sources.
Our charity has created a number of autism publications aimed at parents. These publications outline many current findings and experiences. It is worth keeping in mind that the field of autism research and is always in progress, with new discoveries around the corner and novel treatments and therapies in the pipeline. What is not known or not available today may be within reach tomorrow, so never forget to tune in – one easy way of keeping on top of developments in autism research and treatments is to subscribe to our mailing list (below).
Facebook and other discussion groups are a valuable resource for sharing experiences and learning. Thinking Autism’s facebook page is filled with research, parental input and support. There are hundreds of Facebook groups but two very popular and comprehensive ones are Recovering Kids and Regarding Caroline. Many groups, including these two examples, have valuable file sections worth your time.
Many organisations provide webinars and videos on specific topics: Autism One and ARI educational videos are just two sources. Our charity hosts live interactive Facebook events for our members where professionals share their expertise.
Support groups, events and conferences are another excellent way to gather information and meet like-minded people who can become a part of your support network. Thinking Autism support group contacts and information can be found by contacting us. Contact us, check our Events page, or join as a member to be informed of any upcoming roadshows or conferences.
There have been many books published in the last few years addressing various interventions for for autism. Members of our charity have access to the Thinking Autism library, and for the price of postage can borrow these books.