Diagnosing and Educating Children with Autism: Some failings of the ‘system’ and why it hinders early intervention.

Mark enjoying the outside.

I have left a much larger gap between my instalments than intended, but with work deadlines, illness hitting the family at least twice round and Christmas, it has been hard to find a quiet moment to begin.
My last blog was an honest depiction of my personal experience of autism. As I detailed previously, my typically developing little boy regressed at just over one year of age and was subsequently diagnosed with autism at 2 years and 9 months old.

I detailed my experiences with regards to my sons regression: his withdrawal from social interaction, reduction in eye contact, loss of functional language, and general sense of being in his ‘own world’. On top of this, there were bizarre and repetitive self stimulatory behaviours. If he was left alone with a CD player or a light switch, he would have happily opened and closed the CD drawer or turned the light switch on and off, for as long as you would let him. What I would have given then to be the light switch, just to have him interact with me that way and for that length of time!

I have been flicking through the reports leading to his diagnosis and what strikes me the most is something I touched on in my last blog – how much precious time is wasted. Whilst I appreciate that diagnoses may need input from several sources, how long can we afford to delay giving parents information that could have a huge impact on their child’s life? My son’s diagnosis report states that he showed ‘fairly classical autism spectrum disorder’. After contacting my GP to state that I had concerns that my son had regressed, I received my first home visit from a Health Visitor in October 2005, however, we did not obtain an official diagnosis until September 2006. That is 11 months, to diagnose what was termed ‘fairly classical autistic spectrum disorder’. The final diagnostic report was an amalgamation of the other assessments which were based on ‘parental information’ and notes that specific assessments could not be carried out because my son was ‘uncooperative’
What I am now angered by is the knowledge that evidence highlights the importance of early intervention, yet timescales of 11 months (I have heard from many other parents that this was a quick diagnosis!) are considered acceptable – in my opinion a waste of precious time.

Whilst I feared on many occasions that my son was on the autistic spectrum, I was not prepared for how hard it would be to actually hear this from a professional. There was always the faintest hope that I was wrong, and the doctor would tell me it was something he would grow out of. Upon receiving a diagnosis, that hope was immediately gone and I was left with a sense of loss that I was not expecting. I was informed that autism is a lifelong disability and that there was nothing I could do to improve the condition. That we would have to consider specialised schooling and that it would become increasingly difficult to manage him at home. I was advised to look at the National Autistic Society website, and to enrol on a programme provided by social services called the ‘EarlyBird Programme’ that would give some advice and strategies with regards to coping with my son. I followed this advice since no other information was provided. I was made to feel that it was futile to embark on any attempts at ‘improving’ his disability.

My son attended a mainstream nursery for a short while, but I was informed by the staff that they had never dealt with such a severely affected child and felt that it was detrimental for him to be there. He then attended a specialised observation and assessment nursery for four 2.5 hour sessions per week. After the two years of attending this nursery, when the staff were asked in a tribunal setting what they had taught him, the only response was that he could now ‘sit as part of a group’. That was it!

I am now more aware that the ‘teaching’ methods in this type of setting were eclectic and unscientific. It appeared to me that my son was considered uneducable and as such was allowed to do whatever he wanted when in school, which usually meant repeatedly pushing the buttons on cause and effect toys. This was also reiterated by the paediatrician who had diagnosed him. I now agree that in this type of setting and with unscientific and ineffective teaching strategies, my son was uneducable. Unfortunately, through my exposure to many special needs settings, it is my opinion that most of these schools employ ineffective strategies.

I was informed that when my son finished attending the nursery he would move on to the attached school which was a special school for children with severe and complex needs. I will never forget each day when I arrived to drop my son to his classroom, or collect him; the same young man would be stood in a small fenced area outside on his own. I never saw anyone interact with him, or even in the vicinity. He would look through the fence making noises. Unless it was pouring with rain, the same young man would be there in the same position, making the same noises, with no contact. This was not how I wanted my son to spend a day at school. Whilst he may have been content to be left alone, I could have done this for him at home – school was where he went to learn. Whilst at school, his physical and emotional needs were met, in the sense that he would be kept comfortable and happy, but he was not learning. I accepted this then, because I believed the paediatrician – that nothing could be done to help. I believed that as long as my son was happy, nothing else mattered, until I realised that there were scientifically validated teaching strategies that could improve our lives dramatically – in our experience, this was found in Applied Behaviour Analysis – and through the research I have done since first hearing about ABA, I have found that no other teaching methodology has similar scientific backing, yet in all of my dealings with professionals up until my sons diagnosis, and further still during his time at nursery, I had never even so much as heard of it!

In my experience, even the strategies some special needs schools employ, are not done so correctly. For instance, my sons school detailed that they used PECS (‘The Picture Exchange Communication System, Bondy and Frost, 1994). When they sent reports home in relation to the use of this system, it was apparent that it was not being employed correctly. I contacted the developers of the system (Pyramid Educational Consultants) to discuss how it was being used, and they advised this was incorrect. When the school were informed of this, nothing changed. Interestingly, whilst my sons school, and many other professionals working in the special needs setting, profess some misguided dislike for Behaviour Analysis, they are, I assume, blissfully unaware that PECS (something which most special needs schools will employ –albeit often incorrectly), is based upon the principles of behaviour analysis, specifically Skinner’s book ‘Verbal Behavior’ (Skinner, 1957)

One of a multitude of published documents relating to the efficacy of early intervention and ABA is a report commissioned by U.S. Department of Health and Human Services (1999).
‘It is important to: identify children with autism and begin appropriate interventions as soon as possible since early intervention may help speed the child’s overall development, reduce inappropriate behaviors, and lead to better long-term functional outcomes’ (p.30)
The report goes on to say:
‘It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism.’
And further still:
‘Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning and appropriate social behavior’
So as the mother of a child with autism, why had I never heard about it…

I am furious at myself for blindly believing that those involved in my son’s diagnosis had his best interests at heart. I believed that they would be up to date on relevant information and advise me of the best possible ways to help my son. I believe that I wasted 2 years under this illusion. I am just thankful that I found out that there IS more to offer, there ARE things that can be done, and the future is not so bleak. I want to do as much as I can to ensure that other people are aware of this too and give them the chance to be aware of this before any time is wasted unnecessarily.

My son remained static for over 2 years. He showed no signs of progression, no apparent capacity to learn new skills, despite being in a special needs nursery, with individuals ‘experienced’ with children with autism. When we started on an ABA programme, his progress astounded me and ever since, things have become increasingly easier. I am not imagining that he will be ‘cured’ of autism, however, after believing that it was not possible for him to progress, to see the things that he is able to learn when appropriate and effective strategies are employed, makes me ever hopeful for the future. He is less frustrated, engages in less challenging behaviour because he can tell me to ‘stop’ or ‘open the door’ when he wants something, rather than pinch or bite because something is scaring him and he is unable to use functional language to let others know.

Yes, my son still has autism, he makes strange noises at the top of his voice, he sometimes bites or scratches me when he is terrified or agitated and can’t tell me what’s wrong. We are the annoyance and amusement of countless people in the supermarket, the swimming pool, the restaurant, the aeroplane, the park, I could go on. Wherever we have been, I can guarantee there are several instances of others expressing their disapproval. Sometimes I cry because I am worried, afraid and because I am frustrated that people are not understanding, sometimes I can laugh when he flaps his hands so much it looks like he will take off, or when he sounds like a helicopter breaking down for half an hour at a time. Whatever way I deal with his disability at any one time; whether through laughter, through tears, or through loving him so much that it feels like my heart will burst, it really hurts. I am terrified about his future, afraid of what will happen when I am not here to protect him and am plagued by these concerns most days. I am in the fortunate position of being surrounded by a huge loving family, I am a young and healthy mother and I know that people would care for him should anything happen to me, and yet I am still in a constant state of fear. This just highlights the potential fears of other parents who are not this lucky – older parents, single parent families, those with little financial or emotional security. I have everything around me that I could ask for, and yet I am still terrified.

I imagine to some degree, as parents, we will always worry about our children, regardless of age or disability, however, what is unacceptable is that accurate and scientifically validated information is not being given to parents of children with autism and precious time is being wasted.

A separate blog summarising the timeline of our diagnostic experience will follow.

References:
Bondy AS, Frost LA (1994). The Picture Exchange Communication System. Focus on Autism and Other Developmental Disabilities, Vol. 9, No. 3, 1-19 (1994)

Skinner, B. F (1957). Verbal Behavior. Acton, MA: Copley Publishing Group.

U.S. Department of Health and Human Services, (1999). Mental health: A report of the surgeon general. Rockville, MD: U.S. Department of Health and Human services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.