You have received an ASD diagnosis for your child. In-between specialist appointments and therapy sessions you worry about their future. The reality is, from recent studies, that the majority of our ASD children will encounter a gloomy future as they enter adulthood. It is not what parents are prepared for. Nor a future that they had hoped for their child.
With an ever increasing number of children being diagnosed, just relying on the advice of health professionals (the same advice that has been given for over 20 years) is clearly showing that it is doing little for the long term independence and wellbeing of ASD individuals and their families. This article looks at the outcome of these children as they transition into adulthood, as well as the flow on effect on parents, carers and siblings. Sometimes a look to the future gives us a reality check and the realisation that current mainstream treatment recommendations are not enough. We need to do so much more as soon as they are diagnosed. Autism is treatable. Think about what type of future you want your child to have.
Shown below is the Australian Bureau of Statistics (ABS) estimate of the number of people with autism, by age distribution, based on its periodic Survey of Disability, Ageing and Carers (SDAC, links here for 2009 and 2012 reports).
The biggest rate of growth in the table above is in the adult years: people with ASD 15 years and over grew 2.2 times from 2009 to 2012. Amaze Victoria estimates the number of diagnosed ASD individuals to be 55,000 in 2015. This increase in growth has been described as an “ASD tsunami”. The burden of care for these individuals will primarily be on their parents, or in some cases their siblings. Overall adult ASD individuals experience a lower quality of life than other individuals.
Individuals that lose their ASD diagnosis
Let’s start with what should be good news. It is estimated that 7 to 10% of those diagnosed on the spectrum will no longer fit the diagnostic criteria at some stage. For some it may be due to a misdiagnosis. Brain imaging studies seem to indicate that losing the core behaviors necessary for an autism diagnosis doesn’t necessarily mean the brain has ‘rewired.’ When performing a language task, these young adults have shown patterns of neural activity in some brain regions that more closely resemble those of their ASD peers than the patterns of typically developing individuals. This finding does not negate the idea that those individuals autism has faded. However, the brain functioning is not normalised and it could possibly be that they are compensating.
Many continue to have persistent difficulties, such as attention deficit hyperactivity disorder or language-based learning issues. Psychiatric co morbidities like anxiety and depression are also much higher in this population than in the general population, and so is their use of prescription medicines. Others turn to alcohol or recreational drugs to help them get through life.
A recent article “Autism’s Lost Generation”, looks at older ASD adults that were misdiagnosed in the 1950s and 1960s. In fact, many high functioning ASD individuals slip through, especially the women who learn to be “invisible” and not be noticed. You still often hear of a family member being described as socially awkward or “odd”. These older ASD individuals seem to have more health related issues (diabetes and cardiovascular disease) and psychiatric problems. They are nearly three times as likely to have depression and nearly four times as likely to have anxiety, compared to people without ASD. Repetitive body movements may have been considered as obsessive compulsive disorder or been given other inappropriate diagnostic labels. Interestingly, there seems to be a 33-fold higher risk of Parkinson’s disease diagnosis or a cluster of symptoms described as parkinsonism in older ASD individuals.
The transition of ASD individuals into adulthood has been likened to “falling off a cliff”. They are no longer eligible for the support services that were available to them as children. It’s a whole new maze that stressed parents need to negotiate. Autism does not end when children enter adulthood. The National Disability Insurance Scheme (NDIS) that many parents are hoping will help, is already on shaky ground. The pilot roll out is struggling to cope and there are serious questions about how the scheme is going to be funded. In 2015, 40 states in the USA implemented an “autism insurance mandate”. “While access to autism treatment services has increased as a result of implementation of state mandates, states have struggled to keep up with the demand for services.” This is a worldwide problem of how to provide adequate support for ASD adults.
In Australia, “With an unexplained 25-fold increase in diagnosis in the past 30 years, there are now more children with ASD than the combined number of children with cerebral palsy, diabetes, deafness, blindness and leukaemia.” Productivity Issues Paper on Childcare and Early Childhood Learning Productivity Commissions Paper: Response on behalf of the Australian Advisory Board on Autism Spectrum Disorders. 2014
“In the 3rd Quarterly report on NDIS progress, ‘autism’ suddenly emerged as the biggest distinct disability for participants in the NDIS.”
“The Government made a small step in the right direction when it introduced the Helping Children with Autism package. At the launch of the package, the Prime Minister said it was “just a beginning” … but there has been no progress since then, and the NDIS wound back that first small step. At this stage, the HCWA package that funded about 5% of the early intervention deemed necessary for children with ASD and was as good as it gets in Australia.” Autism Spectrum Disorder, employment and welfare. A Submission to the Reference Group’s Review of Australia’s welfare system. August 2014
It is an unfortunate reality that with Australia’s upward spiralling debt at almost one trillion dollars, the money just will not be available to support ASD and many other support agencies. In 2015 there were already Federal Government funding cuts made to disability support organisations. This is likely only to get worse putting more pressure onto parents and carers.
NDIS facing $3bn blowout: Shepherd. The Australian. March 2016
Turnbull government move to seize control of NDIS. Financial Review. March 2016
Parents that place their children into residential care cannot be certain of the quality of the care they will receive or if they will be abused. In January 2016, a report by the Victorian Ombudsman, found that individuals with disabilities do not always get the care that they deserve.
Young adults with autism face significant challenges after leaving high school. Many on the spectrum finding themselves unemployed, isolated and lacking support. Below are the ASD employment statistics for 2009 and 2012. Although the employment rate for people with ASD rose from 20.1% in 2009 to 35.2% in 2012, this still equates to almost 65% being unemployed. Of those employed, a high percentage are in part time or casual employment.
Approximately 58 percent of those on the spectrum had worked for pay by their early twenties, a rate lower than individuals with other disabilities, and their jobs were typically part-time and low paying.
There are very few studies that have looked at the benefits, the costs, and the cost-benefit ratio of employing an adult with ASD from the perspective of employers. This study in 2015 found that despite the fact that adults with ASD are the most expensive group to provide vocational rehabilitation services for, it appears that they have a strong chance of becoming employed once appropriate support is in place. Convincing prospective employers to take on this challenge is another issue. However bleak this may seem, there are some good news stories of employers that are sympathetic and are willing to employ ASD individuals. Here Sam and his employer Chris are featured on the Ellen DeGeneres Show.
ASD adults are at higher risk of developing chronic medical conditions. If they are able to communicate that they are unwell or in pain, it makes it easier to get them the medical care that they need. If they are non-verbal and reliant on others, it is up to the carers to notice that there is a change in behaviour that may indicate underlying pain. Studies indicate that there is higher incidence of health problems in the ASD population. These include:
- High cholesterol
- High blood pressure
- Insomnia and other sleep disorders
- Increased risk of hip fracture (Autism Linked to Increased Hip Fracture Risk. Medscape. Oct 02, 2014)
- Psychiatric disorders like anxiety, depression (and suicide), attention deficit disorder, obsessive compulsive disorder, schizophrenia
- Bowel disorders such as inflammatory bowel disease
- Muscular dystrophy
A recent report from the UK confirms that ASD individuals die on average 18 years before the general population. People with both ASD and an intellectual disability die even younger, on average 30 years earlier than those without the conditions.
Interaction with the Healthcare System
General surveys of doctors providing primary care indicate that they lack the skills and tools to care for their adult ASD patients. This is particularly important for those ASD individuals that are unable to look after themselves or express themselves adequately. In this case it becomes the carer’s responsibility to ensure that these individuals receive adequate medical care, and not have their symptoms dismissed due to their ASD label.
The same issue arises with emergency hospital visits. Emergency departments can be very busy environments. The sensory issues an ASD individual has to deal with can be overwhelming. Doctors and nurses do not have any training in how to approach individuals with sensory issues. There is some discussion in some large hospital centres in the US to provide sensory friendly areas to make the ASD patient more comfortable and relaxed.
ASD individuals often have challenges and characteristics that may be more likely to get them into trouble with the law, without realising that they have committed an offence. Although we may never believe that our children are capable of committing criminal offences, reality is that their obsessions and naivety about social norms can easily get them into serious trouble. Some of the offences committed may include physical violence, sexual violence, arson, stalking/harassing and computer offences. Higher functioning ASD individuals seem to be over represented in the courts as well as in the prison system. ASD characteristics related to obsessions are prominent in many crimes committed as well as a “willingness to confess”. The core characteristics of ASD individuals makes them more vulnerable when they are required to interact with police or the justice system. The article “Autism and the Criminal Justice System Part 1” provides an excellent insight into the problems an ASD individual may encounter when dealing with the justice system. It also points out that police and the legal system are not trained to deal with ASD individuals adequately. Indeed, they can all too easily be taken advantage of. I would highly recommend reading the article “Autism and the Criminal Justice System Part 1” as well as Part 2. It certainly should give parents and carers a lot to think about should the unfortunate situation occur that your child is involved with the law.
We are seeing more reports of ASD individuals getting into serious trouble.
As children and adults will need medical care, situations may arise where ethical issues may need to be considered. In 2013 a US family faced the dilemma of a child that screamed constantly. The parents after seemingly exhausting all options, decided to have surgery performed on their son’s vocal cords. This operation drew considerable criticism.
This is not an isolated case. Recently parents applied to get permission to have their ASD daughter with an intellectual disability to have a hysterectomy due to her numerous problems relating to her periods. This included: “poor hygiene and polluting herself and the environment, not allowing to put or change the pads and changes in mood and physical health prior to period”, requested surgery (hysterectomy). The parents were refused permission. However, these are some of the realities parents may face as their children get older. For parents, having an ASD daughter that is social but naïve, is the ongoing worry of her being taken advantage, sexually abused and getting pregnant or getting a sexually transmitted disease. Parents ultimate nightmare: having an adult ASD daughter to look after, as well as a baby!
A United Kingdom study has found that substance abuse, whether it be alcohol or recreational drugs, has been underestimated in the Asperger community. “Participants reported that substances were used to act as a social facilitator to compensate for social deficits by increasing confidence in social settings and increasing participants’ ease with which they communicate. The self-medication of psychological distress was reported and was associated with depression, anxiety and sleep difficulties.”
ASD individuals with substance abuse frequently expressed that the overload of stimuli caused by the jumble of thoughts and emotions made them “passive and melancholic”. This obviously has a negative impact on their quality of life.
- … it [using alcohol] makes it easier to put things in words, put it in words more quickly, react faster.
- It doubles the handicap that you’ve got, makes it really hard to take stock of situations. And the drugs make you think even more … like … well … like passive. You get even more passive.
- I find it hard to fill my time — I don’t have many hobbies — although structure is very important. It happened that I got so bored that it made me think: let’s drink tonight, so tomorrow I’ll sleep it off and then another half day is filled.
- Then we had children, and the stress got higher. (…) Well, I started drinking, just to inhibit the stimuli, to subdue them. (….) that helped me get through the evening. It was just to survive, not for the booze.
Parent – Carer Stress and Wellbeing
In the last 2 years there have been numerous studies related to parental and caregiver stress and wellbeing.
- Parents of children with ASD report significantly more parenting stress symptoms, more depression, and more frequent use of active avoidance coping, than parents of typically developing children
- Mothers of ASD children had significantly more stress than fathers.
- Depression and anxiety were lower in parents of adolescents or adults compared with parents of young children
- Mothers reported higher parenting responsibility, distress, anxiety, and depression than fathers. While fathers had higher blood pressure and heart rate variability. Mothers and fathers had lower than average morning cortisol levels, suggesting significant stress effects on the adrenals. Parents of ASD children may benefit from routine health screening (particularly adrenal and cardiovascular function) and referral for stress reduction interventions or other support.
- Parenting stress was higher for parents of girls than for parents of boys, the availability of fewer support services predicted higher parental distress.
- Mothers of children with intellectual disability or ASD had more than twice the risk of death. Mothers of children with intellectual disability were 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure than other mothers.
- Parents of children with ASD may worry more about what will happen to their children upon their death with no one to care for them, or the prospect of having to leave their children in the care of individuals who may not understand their son or daughter’s unique needs
- Single mothers of children with autism spectrum disorders are rarely studied. Not surprisingly they may experience unique stressors. Most mothers (77 %) were at risk for clinical depression.
- Fathers in this current study and mothers in previous studies described their need for someone to listen to them, educate them and others about ASD, acknowledge their experience and emotions, and direct them to appropriate resources.
- Fathers speak of their own sense of loss and efforts to come to terms with unanticipated demands associated with autism spectrum disorder. Fathers of children with autism spectrum disorder feel “pangs of jealousy” toward fathers of typically developing children, yet they are keenly attentive to their own child’s development
Many family and child factors have been linked to poorer outcome in siblings of ASD individuals. However this is not always the case, as it is all linked to individual family dynamics and the extent of the disability. Many siblings report greater life appreciation, as well as spiritual and personal growth. The literature seems to indicate that siblings of individuals with intellectual disability without ASD were emotionally and behaviourally better adjusted than those siblings of individuals with intellectual disability and comorbid ASD. In regard to behavioural and emotional adjustment, internalising difficulties appear to be a concern for siblings, perhaps more so in sisters and in the presence of high levels of stress or maternal depression.
A recent study found greater emotional problems and overall depressive symptoms in siblings. It is recommended that interventions that enhance social support, as well as helping siblings better understand the behaviour problems of their brother/sister with ASD, might be effective for alleviating depressive symptoms.
Although much attention is given to the ASD child, siblings sometimes are forgotten. Not intentionally, it is only that parents are so stretched with trying to deal with the child that has the greatest need. It is important to spend time with the other children in the family, help them understand and look for signs that they are stressed or depressed.
A report published in 2015 details a sad case in which a 10-year-old autistic girl was responsible for the death of her 10-month old sister by throwing her out of the window. While this is rare, reports of ASD adults being charged with homicide is increasing. Although the authors note that the studies between ASD and aggression are inconclusive, individuals with ASD who have poor impulse control and have a history of aggression should never be left alone with minors who are unable to defend themselves.
Employment and Economic Burden
- A recent study found on average, mothers of children with ASD earn 35% less than the mothers of children with other health limitations and 56% less than the mothers of children with no health limitation. They are 6% less likely to be employed, and work 7 hours less per week on average, than mothers of children with no health limitation.
- More than half of caregivers of children with ASD and intellectual disability reported financial difficulty (52%) and having to stop work to care for their child (51%). Compared with ASD alone, caregivers of children with both ASD and intellectual disability were more likely to report financial difficulty, cutting work hours, and stopping work.
- It is not surprising that parents with an ASD child are more likely to require more sick leave than parents with no serious health concerns.
This review is still does not cover the many other issues that ASD individuals have problems with in their daily lives. Sexuality, relationships, intimacy, and gender dysphoria is a huge topic that needs to be left for another time. However, there should be enough here for parents to realise that no, “magically”, all will NOT be fine when your child gets older and enters adulthood. For the majority of children and their parents their quality of life does not get better, indeed it gets significantly worse. Whatever extra effort you put in to address your child’s underlying health and nutritional issues when they are younger, is paid back many times over when they are older.
You are not the only parent that has worried about your child’s future. There are many parents that have come before you. There are those parents that are not willing to try a different approach to treatment, other than mainstream advice because it is “unproven”, there is insufficient evidence, it’s expensive or even “dangerous”. Yes there are questionable treatments, and unscrupulous individuals out there that are too willing to take your money. This is why it is important to find a practitioner that is willing to do the research, know what it is like to have an ASD child, and has the experience as to how best help your child, and ultimately your family.
Many of the core treatments that can help ASD children have come from dedicated parents that have refused to give up on their children. They have gone to extraordinary lengths to help their children achieve their full potential. These pioneers were/are a mix of dedicated parents, doctors, researchers, scientists and nutritionists (many of whom also had ASD children). Together they made sense of the anecdotal reports from parents of supplements, therapies and diets that were helping recover ASD children. The research is now showing that autism is treatable. There are substantial subgroups of children that can be helped with specific treatment protocols. Many of these can be helped to the point of losing their ASD diagnosis. Whether they completely lose their ASD traits is another issue.
Indeed, many ASD traits are valuable assets for the individual, employer and society. Why would you want to “loose” these valuable abilities which many influential individuals in science, music, art, literature, etc, were fortunate to have. Our society would be a much poorer for not having experienced their brilliance.
When my son was diagnosed as autistic over 20 years ago, I as many parents, was flying blind into possible treatment options and a firm mainstream belief that there was little that could be done. I did look into the future and knew that I had to do something. Yes, I was one of those parents that put my son onto “dangerous” diets, pumped him full of supplements, and pushed him to do things he was uncomfortable with. My best scenario for him was that he would do something in computers. Now in retrospect, that would have been the worst option for him.
Recently I read a book No Cows Today by Kris Barrett. This is her story of how a chance conversation with another mother of an ASD child, who changed her child’s diet and was seeing great improvements in her son, lead Kris on an amazing journey to heal her son. She writes about the many highs and lows, joys and disappointments that many parents encounter while recovering their child’s health. Was it worth it? If you ask Kris and many other parents, it was worth every cent and every tear shed along the journey. No matter what your financial situation, you can always make beneficial changes to your child’s diet, add some basic supplements and most importantly address some of their underlying health issues.
There is an excellent book by Jan Brenton, Can we cure autism – Yes we can. Jan has been an inspiration to countless parents for many years offering advice and encouragement on how to help their ASD children. This book is an excellent read for parents who are unsure about where to start to help their child. There are many parents out there that have their child on modified diets, supplements and various therapies. Most likely you are rubbing shoulders with them but have no idea what they are doing. They are the quiet achievers as they put their energy into researching the best treatment options to heal their children. They don’t bother arguing with health professionals or other parents about what they are doing, who want to tell them that they are wasting their time and money. We do not have statistics, and we probably never will, as to how many children have healed sufficiently to become independent adults. Anecdotally, and in clinical practice there are many children that improve considerably. Some may lose their diagnosis. Not all children may become independent, but many develop speech to be able to communicate and behaviourally are well settled so that the family can function normally. They can concentrate better so are able to benefit more from their therapies. They do not have any obvious underlying health issues that are causing them discomfort or pain. Nutritional deficiencies have been corrected with supplements and maintained with a wholesome diet. So as they grow and develop their brain and body receive the nutrients to repair, develop and work properly. As they enter adulthood they have sufficient skills to be employed and have some form of independence.
This is what we mean by helping ASD children achieve their full potential. Parents that have been through the journey of supplements, diet, and financial hardship, the rewards they reap today cannot be measured financially. They are measured with tears of joy as they watch what their children can achieve. How do I know? As countless other parents I have taken this journey. The only tear I had recently was as my son left to start a new job and an independent life interstate. These were NOT tears of sadness, but tears of joy as I watched him go to make his independent mark on the world.