Tag Archives: South African autism blog

When it feels too hard

I will admit that some days or even weeks, it feels so hard and exhausting bringing up my autistic spectrum son. His bad moods and the way we relate to each other, affects our relationship. At times this makes parenting him feel very lonely, sad and even demoralising.

He is such a delightful and loveable child but when we are having an autism crisis (as I have termed them), my son’s behaviour wears me down. He is a child filled with immense amounts of frustration – typical behaviour for autistic spectrum children. His frustration manifests in the expression of anger. For weeks at a time he can shout at us, or blow up about the smallest incident. Sometimes it feels as if I am in an abusive relationship. At these times I really have no idea how to deal with him. I try to be creative and lift his mood. Sometimes it works and changes his attitude temporarily, but the foul mood usually returns. He receives play-therapy and behavioural therapy, which help in the long run but not in terms of alleviating his moods during our ASD crises. As all things pass with the passage of time, so do his moods. They improve and I am left with the happy and delightful personality that makes him so endearing to all.

When his moods get the better of me. I find that when he is in a bad space, so am I. I find it really hard during these times to find light at the end of the dark tunnel we have both entered. Some days I have the patience to figure out how to get us through these bad days. It usually involves pleading, rationalising, bribing, sensory stimulation and a lot of hugging. However, at the end of some days my tether is worn down and I can also shout and scream.

It is hard to foster a relationship with an ASD child, irrespective of how intellectually strong they are or how minimal their cognitive impairment is. They are compromised in the social area, which makes it challenging for them to read social cues. My son can read happy cues; smiles and laughs are obvious to him. Sadness and anger as non-verbal cues are hard for him to gauge. Often he only realises I am angry when I am shouting and then he is not always able to understand why I am angry. This is due to a compromised ability with regards to empathy or theory of mind. Often ASD children do not want to be sociable, they prefer their own company. As much as my son loves my company, it is more because he wants me present as opposed to wanting to interact with me. Socially he does not know it is inappropriate to tell a person mid sentence that they need to keep quiet now because he has had enough. Socially he does not know how to be polite. These lessons come with exposure, time and repetition. Obviously all of these behaviours make it hard to develop a relationship.

Our son’s lack of empathy, not only limits his ability to understand why I am angry, it also limits his ability to understand why, for example, my Nikon camera is not a suitable toy and he becomes angry when I say no. He also does not understand why it is dangerous to run across the road, touch the stove or start my car. He does not have the theory of mind to decipher why these may be unsuitable and why they make me angry or scared, as he is not angry or scared. This also results in affecting his mood. He hates hearing no – irrespective of what the reason may be behind it.

Theory of mind is defined as: the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge etc. – to oneself and others and to understand that others have beliefs, desires and intentions that are different from one’s own. Related to this concept is empathy – which is the ability to put oneself in another shoes.

Not having shared interests is another stumbling block in battling to foster a “normal” parent-child relationship. At 6 years old my son still sees me as an extension of himself. As a result our relationship is based more on his need for me as opposed to him seeing me as a separate person, with my own wants and needs. Although he does try play with me at times, it is always limited to the same games – around nurturing and care. Or he will play his own version of a game, which will not include active participation from me. At this stage, we have no common or shared interest that could help foster a relationship or set the platform for games we can play together.

To be honest it is often boring and for me to feel like I do not have a material relationship with my son. I know he is happy in the relationship we have, and for him he knows no other way to relate to me,. Perhaps it is about my acceptance. Accepting that for him it is important that I take and fetch him from school, that I am present for him physically and not necessarily involved. I try really hard to accept these small things, but at times it feels reminiscent of being a young adult when you are in a “ bad relationship” with a friend or boyfriend that is very one sided, where you feel a bit used. The other person gets a lot out of the relationship and although you love them so much, you do not get the same output. The relationship is very one sided. I do not have any grand illusions about parenting or think of my children as my friends. but I do have very different relationships with my other two children, and it is hard sometimes to not yearn for this kind of relationship with my ASD son.

I do not have any pearls of wisdom on the difficulties of having a “normal” or even “semi-normal” child-parent relationship with an ASD child. I do know that many ASD parents feel the same way about the relationship with their ASD children, especially when they are high functioning. It should be easy to foster a relationship with these kids, despite the difficulties around moods and tantrums, empathy and shared attention. However their social deficiencies do make it very hard. it is very difficult to develop a meaningful relationship with this person who you love so dearly, but who does not see you.

Then of course one ponders the future. I know he is 6 and has a long way to develop socially, but already I see my youngest child outgrowing him socially. It is a worrisome realisation and I am concerned about his ability to have meaningful relationships with others. He may find someone to love, but will it be unrequited. It may be hard for a person to be in a relationship with him, if it such hard work and one sided. I know I should not contemplate his future too much, as I never know what will materialise in his life and with his abilities. He does have so much potential but being a realistic parent these thoughts do cross my mind.

Having an ASD child exacerbates any feelings of impotence I have around parenting. I cannot do much to help my son. He constantly makes me tap into emotions and feelings I do not like to explore; powerlessness, fear, sadness, anger even sometimes a dislike for my parenting abilities and his difficulties and moods. All of these emotions harbour a lot of anger in me. I know I need to move these feelings of anger, but I am not sure how to do this. What are we supposed to do with anger? When we are sad we cry, when we are frustrated we scream, when we are happy we smile. I keep my anger close to my heart and this exhausts me.

I may not have learnt skills yet on how to handle my son during his ASD crises. Also, I may not have learnt ways to bond with my son on a “normal level”. I do know how much we love each other and we have a very special connection. I can only surmise that as he gets older, we will establish a more common ground or at least hope we do, and that with maturity his moods and expression of his feelings, desires, needs and wants improve.

On the other hand I know that I need to feel the anger. I can express anger about his condition. I can say I am so angry about his behaviour in an instance or even that I am angry with him. I can say I do not like him in a certain instances. For some reason though I feel traitorous saying these sorts of things about my special needs son. I know there are times that we do not like our children or they disappoint us. This does not mean we love them any less, but acknowledging this feeling with a child that has a congenital condition feels very cruel and heartless. I also know that keeping these feelings in, is really no good for me. I need to feel them and move them. I have only recently started feeling the sadness, feeling the anger is however more challenging.

I know that dealing with his anger, my anger, his moods, our diminished ability to forge a normal relationship, our lack of attention sharing and his lack of empathy – would all be so much easier if I could relax and accept the situation for what it is – if I could have faith that he will grow in time and give him the benefit of the doubt.

We do not live in a world of theory, and when I am in a positive space this is easier. When I am in a negative space, I do not feel as upbeat or insightful as usual. This is normal and extremely common when parenting a special needs child. Just as my son’s mood will improve, so will mine. I am a person who usually gets her motivation internally and am not particularly affected by my external environment. It is a novel experience for me that my children, and especially my ASD son’s issues, can have such a profound impact on me.

In closing a few words from Dr Seuss:

“ And when you’re in a slump
you’re not in for much fun
unslumping yourself is not easily done.”

The gambit of therapies

These days it is fairly common for children to receive vast amounts of therapy. The inability to compete academically, socially or physically can sometimes be resolved with therapy. It is therapy that can often close the gap between a child’s abilities and inabilities. In younger children, problems are often treated too hastily. If left alone many problems may resolve themselves, but there are also cases where a more serious problem may develop. Because there is sometimes a small window of opportunity to correct certain problems, many parents are just not prepared to take a risk and immediately resort to therapy for their kids. This is a typical situation for neuro-typical children, so imagine then the therapy needs of a special needs child. When there is so much more at risk and so much more to address, missing the window of opportunity is loaded with even more consequences.

My autistic spectrum son does all the mainstream and common therapies. Fortunately the bulk of them are during school hours – speech twice a week, occupational therapy twice a week and physiotherapy once a week. In the afternoons, he also does remedial therapy, play therapy and behavioural therapy. We have done ABA (applied behavioural analysis) therapy in the past. Over and above his special needs schooling, this equates to an additional 8 therapy sessions a week.

This makes me wonder if my son receives too much therapy – is he “over-therapised”. Research supports that children with Autistic Spectrum Disorder (ASD) who have 20-40 hours of therapy or interventions per week, have a higher probability of improving their condition and symptoms. Some even go on to speculate that early and intense intervention can “cure” autism. I personally do not know what I believe when it comes to autism being curable. I believe children can learn many coping strategies and behavioural techniques, such that with maturity, they may no longer present as ASD. Perhaps a more appropriate term used is that autism is “recoverable”. This may appear to be semantics but I quote below casework and research conducted by Dr. Rimland to highlight the difference. Dr. Rimland is an American research psychologist, writer, lecturer, and advocate for autistic children, ADHD, learning disabilities, and mental retardation. Dr. Rimland was the founder and director of the Autism Research Institute (ARI) and founder of the Autism Society of America (ASA). Rimland was long an internationally recognised authority on autism spectrum disorders and was the father of a high-functioning autistic son.

“Dr. Rimland did not want to use the word “cured” to describe these children. Instead, he preferred the more appropriate term “recovered.” He liked the analogy offered by Stan Kurtz, director of the Children’s Corner Schools in Van Nuys, California, and a supporter of ARI and evidence-based medical approach, to illustrate what recovery means: ‘Assume that a person is hit by a car. His legs are broken, and he suffers brain damage. At this point, he is considered disabled. Now let’s say after intense rehabilitation, he is able to walk again with a slight limp and has some remaining neurological issues but can live a normal life-or maybe he heals so well that you couldn’t tell he was in an accident at all. That’s recovery.’”

“The only difference between that and autism is that our children were somehow more susceptible to being hit by the car-and some of the shrapnel from the car quite often remains in their body. We need to help these kids get rid of that shrapnel-and keep them away from the street-in order to give them the best opportunity for recovery. Similarly, many children once diagnosed as autistic now exhibit only nuances of their former behaviours; for instance, some still have mild ‘stims,’ or an exaggerated focus on favourite topics. Despite lingering issues, recovered children will, in many cases, be able to live independently and happily, have productive careers, and enjoy rewarding relationships with others. They may not be ‘cured,’ but they are certainly recovered from the devastating symptoms that once blocked their path to a normal future.”

I personally struggle to believe that a condition that stems neurologically can be cured or reversed? When looking at years and years of research, two of the latest research studies I want to pick up on, highlight how complicated Autism can be and how it is a genetic condition that stems with neurological complications. (i.) The latest research from the Beth Israel Medical Centre, in conjunction with the Harvard Medical School, very simplistically have linked some cases of autism to a microscopic deletion or duplication in DNA. (ii.) Recent research (July 2011) scientists at the Weizmann institute have seen in sleeping autistic spectrum toddlers fMRI scans showing lowered levels of synchronisation between the left and right brain areas known to be involved in language and communication.
These two examples are only but a few that make it difficult for me to understand how autism could be curable unless the condition in the brain could be reversed. However I have read much literature that does advocate for the possibility of autism being cured. The Autism Revolution has many examples of children who have been cured. On the basis that autism is a recoverable or curable condition, therapies and interventions seem to be paramount in improving a child’s prognosis.

My son receives about 30 hours of intervention a week, including his schooling. This is still within reasonable realms. I also believe firmly in giving a my son the ability to be a child and to explore play, relax, be physically active, be bored and do all the things a child should do. He needs to have ample time every day to be a child.

There really are so many therapies for ASD children. There are the mainstream therapies (or conventional therapies) and then there are the alternative therapies and of course the more controversial therapies.

We have tried and are still continuing with some of these; speech, occupational therapy, sensory integration as part occupational therapy, play therapy, floor time approach, behavioural therapy, remedial therapy, essential fatty acids (yes this is a recognised therapy).

Some of these approaches such a floor time, ABA and sensory integration have become methodologies that we really try and implement daily at home. For example through brushing programs, weighted duvets, floor time play sessions, ABA is used daily in how we talk to him and rationalize with him. And of course good nutrition, vitamins and essential fatty acids are part of day-to-day living. We have also read success stories of other therapies and although we may not have actually done the therapy we have adopted a version at home to great success; for example visual schedules have worked really well for us when implementing new routines or going away on holiday. Social stories have also worked really well for new experiences and lowering anxieties.

All of the therapies above have made a difference in our son’s life. We have continued with the ones that we feel are essential or find sustainable. We have discontinued the ones we feel have served their purpose and we are constantly in exploration of others. We know in time we may have to revisit previously used therapies and will use some of the others mentioned below.
Visual schedules, PECS system, neurotherapy, Social story therapy, Casein free diet, Gluten free diet, Vitamin C therapy, Vitamin B6 and magnesium therapy, Auditory interventions, vision training, relationship development intervention, auditory processing are all therapies one can do. For us some are not suitable and others we would like to try in future.

It is a difficult decision to choose which therapies to do now, which to ignore and which to do later. There is only so much time in everyone’s lives. For us it is about what is available in South Africa, what is convenient and appropriate at our son’s stage of life as well as ours. What has benefit for him now and makes sense emotionally, physically and financially for all us. Whether or not therapies will work, we never know. To paraphrase Temple Grandin’s comments from her book, Thinking in Pictures – some therapies will work for some children and other therapies not. With this complex disorder you will only know once you try.

Autism is a complex brain disorder .We adore our son and want to give him the best possible life. This is only one of the reasons why we have intervened and why he receives 30 hours of intervention a week, excluding all the other things that are part of his daily life and routine. We hope that all of our endeavours and interventions will lead to him having, according to Dr Rimland’s research, a “normal future”.

I do want to caution parents about a few things with regards to therapy. Make sure you are using a reputable therapist that comes with references. There are “therapists” who have no qualifications or experience in special needs. When dealing with neurological based problems, trained professionals, or someone who has proven experience in the field, will be better equipped at making a difference. When it comes to alternative therapies (many of which I have not explored myself), make sure you are learned in them and they are not irresponsible therapies. There are treatments that are dangerous to children and there are sadly individuals who are looking to make a quick buck. You are entitled to a second (or third) opinion if you are not sure. A very simple example where something can go wrong is Vitamin B therapy – you need to be with a skilled physician who is obtaining optimal levels in your child’s body. I am not saying do not do Vitamin B6 therapy – it is something I hope to do one day – just make sure your child needs it and that the therapy is properly administered and monitored.

If you feel a therapy or even therapist is no longer making a difference in your child’s life or working for you, take a break. You may then see a change in behaviour that proved it was still valuable. Or you may realise your child has out grown that therapy or it is not longer helping. We become very comfortable in what we know as we do not like the change too much in our special needs kids lives (rightly so), but sometimes we reach a status quo that is a waste of time and energy and it is best to move on.

Lastly whether or not you believe autism is curable or recoverable, be aware of people who make false promises in this regard. If you believe the condition is either curable or recoverable, then stay realistic. To go back to Dr Kurtz’s example – there will be some people who will recover and learn to walk again and some who will not. The factors in this are many and variable. I think the same applies to Autism – some low functioning kids will learn to speak, and some high functioning kids will recover but of course there are the cases where this will not happen. Do not become all consumed and ruin your finances, marriage and family in pursuit of an unrealistic goal. Parents need to achieve the balance between faith in their child’s abilities and chances of recovery and being realistic. Parents are the child’s championing force but need to remain cautiously optimistic, and trust their guts. I do not know how and when to tell a parent it will not happen or it will happen. Of course they need to try, and of course at times they will disagree with their spouse/partner, and of course their child may be a miracle child. We know there are so many. But somehow they need to maintain perspective – we all discover in our own way, what this perceptive is and how we find it. Find your grounding force and keep it alive. For me it is the support structure I have set in place. I always have people who know my son that I can ask what is the likelihood this or that will happen and whether I am pushing too hard. Sometimes I even underestimate him and in this case they put me back on track. When there are times that something may not be achievable by him, I try as best as I can to mourn the loss and move on.

P.S. Please refer to Informative reads page for interesting articles and information relating to this post