Tag Archives: autistic spectrum

Looking back on six years.

My son recently turned 6 – it was such a beautiful day of good behaviour, great fun and only doing what his heart desired. It really was his day! It all worked out so wonderfully and I tried not to over analyse the day but I did wonder how we could recreate this wonderful day, all the while knowing it is not feasible to only do what he wants on his terms all the time.

On the day I just went with the flow and really enjoyed his special day with him. That night I will admit to tears and immense sadness. Six is a big number for neuro-typical children – six year olds can typically do so much for themselves and normally want to be independent. But my six-year-old Autistic spectrum son is not nearly at this level. This makes my heart ache. He so often cannot do the small things, buttons or shoelaces. He still puts his pants on backwards and his shoes on the wrong feet. He also struggles with the big things like swimming, reading, writing or riding a bike.

For once I will not counter this with a “but” or with all the things he can do. I am realising it is okay to feel sad at times and feel the emotion. If you feel the emotion you can move it. This is a very new feeling for me. I do not normally sit well with being overly emotive; I pride myself on being strong. When you have a special needs child you need all you wits about you, all the time. Your child demands this. There is no time for self-deprecating behaviour and wallowing.

In looking back on my sons six years of life, maybe it is time to reveal a bit more about him and our path thus far.

I had a normal pregnancy with no complications; he was born at 39 weeks via elective Caesar. He was born at a good weight and all tests and results came back perfect. Yet he was a difficult baby, feeding was difficult to start, and at 6 weeks the reflux, colic and lactose intolerance went into overdrive. He would settle for 30 minutes at a time, and then we would start the feeding, winding and cramping cycle all over again. He also became over sensitised very easily. As a first child I knew he was difficult, but reasoned it was normal as you often hear of colicky difficult babies. Obviously in retrospect the signs were there early on. But there is no reason to say that colicky, difficult babies have anything but colic and gastro-intestinal upset.

He developed slowly – specifically his gross motor functions. His speech seemed on track and yet at 3½ years, with an assessment from a language therapist, we became aware of his delay in language development.

He was also a difficult toddler and at around 18 months, I had a suspicion he may be autistic. I did not however understand or have any knowledge about the Autistic spectrum. I believed that autism was coupled with symptoms such as rocking, head banging, lack of speech – similar to a “locked in syndrome”. I had no idea what it entailed or the full array of tendencies. Most people are ignorant about things that do not concern them, or those around them.

My suspicion about our son’s autism was based of the way he came apart when he threw a temper tantrum. I could never put it into words at the time, except that he became “unglued”, not through violence but he would be so sad and inconsolable. I recently learnt more about this tendency. Whether or not it is common in Autistic spectrum children, I do not know. In truth it is not something I have heard many parents comment about in their own special needs children, but maybe that is because compared to some of the other behaviours, it is not alarming. For me it was something I felt was uniquely different about him as a young toddler.

Annihilation anxiety is the most primal anxiety in infants – “the human infant in its helplessness, is saddled with a fear of its own annihilation.  The protest cry of the infant is designed to summon the caring ministrations necessary to restore a homeostatic state and to avoid any threat to its continued existence.” (1)

Annihilation experiences and anxieties are common in early childhood. They seem to manifest in the following ways; “fears of being overwhelmed, of merger, of disintegration, of impingement, of loss of needed support, of inability to cope, of concern over survival, and of responding with a catastrophic mentality.” (2)

My own description of this relating to my son as a young toddler and even today is that his becoming “unglued” is probably due to annihilation fear or anxiety. When he becomes so upset because he cannot have his own way or he is frustrated, he feels overwhelmed and helpless. Then the crying and helpless feelings overtake him, his behaviour is as if he may actually come apart. He is inconsolable and cannot hold himself together. The dark clouds of emotional anxiety overwhelm him. At times like this, I try to let him calm himself down; strategies to calm himself are of paramount importance. But sometimes the ultimate way  is to let him climb into my lap as I hold him like an infant, until he calms. Fortunately this is becoming less frequent but it still is the quickest and easiest way to restore that homeostatic state.

At 2½ years, he was still developing slowly and after a brief hospitalisation at age 3, we started play therapy, mostly to address his anxieties. He was such a unique child and presented so differently that the extremely experienced play therapist never considered autistic spectrum as a diagnosis. She did refer us to a psychiatrist for an assessment at around 3½ years of age. I had done some basic research and knew based on all the psychiatrist’s questions that she was investigating autism as a diagnosis. At this stage we were not given a firm diagnosis other than cognitive language delays and a therapy path was devised.

2 months before his 4th birthday a locum school principal requested a meeting to discuss our son’s progress. This resulted in her disclosing that she thought our son had special needs. When I begged her for her professional opinion as to what his problems could be, she confirmed my gut suspicion, with an Autistic Spectrum diagnosis. I was devastated even though I was not surprised. I found it extremely hard to accept. In truth to this day, I am still not convinced, but in my heart I know it is true!

It has since then been an arduous journey of discovery. We continually increase our understanding of his condition, which is constantly evolving. Obtaining a good network of experts and professionals we trust has also been a challenge. As a new year approaches and he starts at a new school, this will change and we are in a way back at the beginning, which is scary for us and of course for our son.

But in truth these are the easier parts. When it comes to assessing people, referrals can always be used, and trusting my gut is helpful. Seeing how they bond with my child is an important factor. It is also feels so easy because I have a path of action and a semblance of control.

It is the day-to-day things that are so hard. Understanding some of his behaviours and anxieties. What he can and cannot do, versus what he is not interested in doing. His sensory sensitivities are so hard to grasp, as is what is going on in his head. His sadness and at times depression, his anger and frustration, his bad moods, his anxieties – these leave us all perplexed.

The day-to-day planning is also so time consuming and draining. Holiday preparations, aeroplane trips, shopping malls, restaurants can all be exhausting at best. Parents of neuro-typical children take for granted the decision process they go through. Special needs parents have to think of all the eventualities, variables and permutations. If you do not think of them and have strategies for when the breakdown happens (because it will happen) it can be the difference between a scene and a mini catastrophe. We also need to research so many of our decisions for example sensible holiday destinations, as not all places are suitable. A further challenge is finding appropriate relaxed restaurants, parks and places for outings -what should be daily, easy decisions often need to be laboured over.

Of course there is a counter to all of this. He has the best smile and laugh. He is so loveable and confident even bullish at times. So clever, even if it is in an off the beat kind of way, and he surprises me all the time. At the end of everyday in the reflecting moments of happiness and sadness, my heart bursts with such overwhelming love for him. Even though I do wish he were not so hard and exasperating at times, I love him for all of him.

Looking back on 6 years, it has been hard and I know the next 6 will be tough too. Who can anticipate what the teenage years will bring. Finding parenting hard or exhausting, disliking aspects of our children and ourselves as parents, needing a break, desiring a different set of outcomes. Giving up on dreams for our children, and for ourselves, mourning the losses of the person you thought may be or what you hoped your children might achieve one day. Living with continuous uncertainty are thoughts we as parents never like to indulge and always counter with a positive. I can write these down and think them, but I am still learning to feel them. This does not make me a bad parent. In the long run, it is supposed to be part of my healing process in having a special needs child and lessen my anger and make me a better person and parent.

I am coming to terms with this sadness and it gets easier. I think that in the last six years, my growth has also been slow. I can only hope I grow and handle my son and his difficulties with aplomb and tackle my own personal demons with success. But as all parents do I wish and hope my son’s success is far superior to mine, not for my lack of trying but for the success of his.

References:
http://www.attachmentdisordermaryland.com/attachmentdisorder.htm
http://www.encyclopedia.com/doc/1G2-3435300090.html

Who needs to be medicated?

We live in a society where some parents are perhaps a bit too blasé about medicating their children. It is not uncommon in some primary schools to find a handful of children in each class, who are on some form of medication and most often these are concentration-enhancing drugs.

I am not going to discuss the merits of medicating all children; my focus is special needs and with special needs comes a whole gambit of medications, which are often necessary for many reasons other than purely concentration.

I am of the opinion that children of our generation are generally over-medicated, that is medicated too easily or when they do not really need it. I think parents do not always explore all avenues before resorting to medication. Medications are also necessary at times and I can only caution parents to make sure they are fully educated about these medications before entering the drug abyss.

I am both for and against medicating children. I know it is a bio-polar view, but medicating children is not always a clear-cut case. There are times when it proves beneficial and times when it may just be irresponsible to medicate and also times when it may be negligent to not medicate.

When we had to decide whether or not we would medicate our son it was an extremely difficult decision, which involved many decision trees and areas of vacillation. I can only hope our experiences help some parents who are going through this decision process themselves. And caution parents for whom it may not necessarily be the correct approach.

There are the clear-cut cases, where children have to be medicated; seizures, epilepsy, depression, psychosis and generally where a child may need medication to survive or lead any form of a quality life.

Then there are the cases that some special needs parents are faced with where medication is certainly beneficial but not necessarily essential and this is a journey of discovery and often of uncertainty.

There are of course the cases where a child probably does not need medication, but schooling and other societal pressures may lead to the parent believing their child will be best off medicated. These cases can sometimes rather be handled with diet change, behavioural therapy, a new methodology or approach to traditional therapies, an alternative parenting or even schooling approach, can often help children on this cusp.

Medicating children is a very emotional subject, especially as many of the medications contain brain-altering substances on a very basic level they normally change dopamine and serotonin levels in the brain. In truth why certain drugs work or what ends up being the concoction of drugs that do work for a specific brain is not yet a precise science. A game of trial and error is often the path to success and this success can also be short lived. It is ironically often the type of drugs that work for a child that will lead to a diagnosis of the child’s problems.

My son was battling at school; this is at a remedial school. Medication was suggested. Off we went to paediatric psychiatrist number one, child in tow. An “atypical antipsychotic” drug was recommended. We were reluctant; it just did not feel right. After serious deliberation we decided to spend a few months looking at alternative options. We went the natural route and saw minor improvements but nothing that made the major difference that was required for him to start coping at school.

I am happy I tried this route first, as when we did finally medicate we were certain we were doing the correct thing. I do have friends who have used diet changes and natural remedies and had great successes with these. I really think if a parent is unsure about medication or if medication is suggested but not essential, this is an important path to try. Diet changes and sensible alternative therapies have their place. Not all doctors agree on this approach and many scoff at the idea, however there is one thing I learn all the time with special needs, you never know unless you try. Some things work for some kids and not for others. Keep in mind some therapies can take up to 3 months to reveal successes, so it is a game of patience. Also it is best to only introduce one new intervention at a time.

Antipsychotic drugs are often recommended for children on the autistic spectrum especially children who are below the age of 5. This is because there are brands that are approved for children of this age. But autism is a condition that cannot be medicated. It is only the symptoms and co-morbid conditions that can be treated. These drugs are prescribed in children to help treat behaviours. The biggest issue I have is that psychologists prescribe the drugs based on school and parental feedback, and a limited time of interaction with the child. I think many diagnoses are made with foreclosure. Whilst I am not sure what the correct method of medication prescription should be followed, I think it is a flaw in the system of paediatric psychology. The child of 4 cannot explain what they feel or what happens in their body or mind. Parents and teachers are advocates for children but this is also not always an appropriate approach. For example, I think my assessment of my child’s behaviour is much worse than it actually is, because with me he is more difficult, whiny, anxious, clingy and moody than normal. I get tired of having to be brave and work so hard at parenting and see how his behaviour affects our family. But is strong medication for him really the correct approach? Perhaps I am the one who needs to be medicated to take the edge off of me? Then I can perhaps also handle the stress of special needs better. Perhaps medicating children needs to be more of a collaborative process with a psychologist involved. I am not sure what the answer is but I do believe that too many children are medicated and also medicated too easily or perhaps incorrectly.

My son is difficult but he does not have repetitive or stemming behaviours, he is not violent, he is not at danger of hurting himself or others, he is not disruptive in class, (he used to be and strict behavioural tools in class has helped him conform – not medication). I know many parents for whom antipsychotic drugs have been a lifesaver and for others who it has not helped and for others whom it was a disaster. Once again you cannot know unless you try. But also use your gut as a parent and get all the facts.

I was very scared to medicate my child let alone with antipsychotic meds. It was just not an option for us. We felt the behaviours our son had were manageable with therapies and maturity and there were other issues that were more important like his battling at school. Something else that really helped was a more independent view from an experienced person. My sons school principal told us she felt the medication recommended was not suitable for him, in her experience the medication suggested was typically used to treat other symptoms from those our son was displaying.

We decided to wait a few months and closer to his 5th birthday the school approached us again. His biggest problem was that he had so much potential but was not realising any of it and was battling to make sense of things at school from speech and language to developing muscles. Concentration was an issue and so were his autistic spectrum traits, such as not doing something if he did not want to or saw no reason to. Recently our son refused for months to do a puzzle at school for his new teacher. Puzzle building is an important basic skill for math and reading. After a few months I asked him; “boy why will you not do a puzzle for teacher?” His response “because I can.” How do you argue with that!

Our next debate; can you and should you medicate your child to reach their potential? I know many neuro-typical parents are faced with this. Is it fair to give a child drugs to help them be an A student instead of a C student?

I think the answer is potentially but is it worth it? Many parents do and this is why so many normal children are on concentration-enhancing drugs, to conform to the pressure to achieve. And as parents we all want our children to succeed.

For us a medication like Ritalin was not going to help our son achieve his full potential. Perhaps he never will. It is about helping him learn foundation skills. He was behind his normal peers and was falling behind in a remedial environment as well and for his abilities this was a real concern.

This was our starting point into the drug abyss. We started with Ritalin, which in itself is such a controversial drug. I know the feelings I had about antipsychotic meds may dredge up a whole similar experience for parents about Ritalin. For me this in the scheme of things was a manageable alternative. It has not been a miracle drug for us but our son has shown marked improvement and now does manage far better to learn and understand concepts. Why Ritalin works for him we are not sure. Generally Ritalin can compound autistic spectrum symptoms such as anxiety and over stimulation. This is the reason why medication is not a science; Ritalin does not work for many autistic spectrum children yet works for others. We are essentially treating our sons co-morbid ASD symptoms namely ADD. But his concentration is also affected by his lack of executive functioning, difficulty in motor planning and lack of shared attention, which cannot be medicated.

With medication come many side effects. Which is something every parent needs to be aware of. The use of medication can often lead to the requirement for another medication.

We take long breaks from Ritalin; doctors have differing views on this. After a long school holiday and returning to a new year of school, we had decided to try without Ritalin. It is good for parents to assess a child’s growth and see if medication is still necessary. These types of drugs are not something you want to keep your children on for prolonged periods if possible. In our case our son battled so much without the medication and a new school year with raised expectations that it lead to a little depression and a lot of anxiety. In fact as he became older we found his anxieties becoming more and more prominent. Back to medication options and research. We started our son on Ritalin again and also a mild anti-depressant to help manage his anxieties. The combination has been good. Our son’s bubbly and beautiful and even bullish personality had returned. I learnt not all medications make your child dopey or necessarily affect them in an undesirable way.

This for me is an interesting phenomenon about medication; often a fine concoction of small doses is required to achieve the optimal state or balance. It is a path of trial and error and patience and anxiety on the parent’s behalf. The psychiatrist did also advise us that a child’s moods can be severely affected and then mood-stabilizing drugs may be required as well. We were lucky we did not require this, which does not mean in the future we may not. This is why a good psychologist is paramount so they can explain all the issues to you upfront and you can know what to look out for.

This is why I call it the medication abyss – medicating your child can feel like a deep bottomless chasm. We have only been doing this for a short period of time and it feels like forever. There are so many medication options and brands out there that all can have a good or not so good effect. When medication is needed, finding the optimal balance and ideal option is daunting. Once you are on this path as a parent, it is continuous for a period of time and maybe even forever. You will have parents who will judge you for medicating your child and some who will judge you for not medicating your child. There are so many considerations before entering this arena.

A therapist working in a drug rehab facility recently quite vehemently berated me. Telling me how by medicating my child I was altering his mind and how this would cause him to become dependant on recreational drugs in the future. The argument is not so simplistic and I assure you, you will come across it often. There is the opposing argument that also holds true. If a child needs medication and is not medicated this can lead to many problems in lack of self-esteem and as they feel more and more out in society they may resort to recreational drugs. Neither argument though is as basic as that. There are so many other factors that come into play. How many drug addicts are there who have never had medication or needed medication? Recreational drug abuse and personality types and addiction or tolerance levels are not part of this argument and should not be part of the argument when deciding to medicate your child, although many may disagree.

As a parent you need to be aware of the fact that no medication situation is likely to remain stagnant. There will be constant tweaking, constant new symptoms, constant changes, body changes, and brain changes. What works now may not work in a year. And then a year later may work again. This really freaks me out and I really battle with this. We are for now comfortable yet sad about the fact that we need to medicate our son, but we do know how beneficial it is for him. Seeing your 5 year old depressed and sad and so different to the child you know is a scary wake up call.

Our path going forwards with medication is not nearly over. I know we will perhaps need a change in the future. I cannot say that one-day antipsychotic drugs will not be necessary for us. I can only hope my son will one-day have a future where medications are not necessary. We are always looking at alternative options and I believe that a combination of the two together is very effective.

I have compiled a consideration list for parents when it comes to medicating:

  • -Trust your gut – you know your child the best
  • -Schools do tend to push medications, it makes children easier to handle and teach
  • -Consider alternative options such as behaviour therapies, ABA therapy, diet changes, optimal mineral and vitamin load, food allergens etc.
  • -Understand all alternative therapies properly as some can be irresponsible
  • -Find a doctor you like and trust and change as many times as you need to until you feel comfortable
  • -Understand the side effects. As doctors can be flippant about side effects
  • -Ask as many questions as you need to
  • – Be careful of what you read on the Internet
  • -Be prepared for a road of trial and error
  • -Take your family into account
  • -Find a trusted independent source that knows your child and can advise you objectively. It does not need to be one person.

The key lessons I have learnt in this arena are: Deciding to medicate your child is a very personal decision. Try not to let schools or society pressurise you into medicating your child. It is a road of trial and error. It can be for some a very emotionally charged decision process. Everybody has different circumstances, your child’s issues, your family needs and dynamics and tolerance levels. Trust your gut, be informed and if you think it is going to be the right option for your child, do not beat yourself up about the decision..

By Amber Tucker

Updated Note:

In the December issue of the Special Kids magazine, Paediatric Psychologist Brendan Belsham wrote an interesting article “Conditions masquerading as ADHD”. There was some interesting statistical data on the under and over diagnosis of ADHD, from the Great Smoky Mountain study in the USA.

The stat I found most alarming and interesting based on my article above and my statement that I feel children in today’s society are overmedicated. “57% of children who were prescribed stimulant medications actually met the criteria for ADHD.” The article was very informative and explained what other conditions may present as ADHD.

He also spoke about foreclosure and referral bias with regards to diagnoses. And a new concept I have not yet come across medical reductionism “ which refers to the error of reducing an inherently complex matter into an overly simplified, one dimensional diagnoses.” Saying many doctors and parents for various reasons fall into this trap. This again was interesting to me, as I stated above that I feel my interpretation of my son’s behaviours and even that of his teachers may bias a diagnosis or medication prescription.

I recommend this as an interesting read for parents looking at medicating their children.

Definitions:
Dopamine – is one of the brains neurotransmitters, or chemicals that transmit signals in the brain. If your dopamine levels are low, you may experience memory and attention troubles, depression and social anxiety.
Serotonin– is a neurotransmitter that can improve mood, enhance sleep and reduce the sensation of pain.
ABA therapy – Applied behaviour analysis (ABA) is a science that involves using modern behavioural learning therapy to modify behaviours