Biography -The early years

Alan was born April of 2007, as an infant, he was bottle fed and no apparent concerns about feeding. He was no different than any other newborn baby.

By eighteen months old, we were already working closely with York Region Early Intervention Services, Alan was not responding to his name, had poor eye gaze, not using words to communicate, next to no body language, not playing with toys, although he did throw lots of his toys, not interacting with his older sister Rachel and/or peers and had difficulties with walking/ balance.

With this realization that Alan is faced with “Global Developmental Delay” (GDD), we as his parents/ advocates, we continued to proceed to our Pediatrician for help and we continued to voice out concerns about Alan’s overall development including fine & gross motor abilities, communication, social development, self-care skills and cognitive development.

The Pediatrician began making referrals and we enrolled him in many different areas of therapy;

Alan was observed and treated by a Physiotherapist (PT).  Alan could crawl up the stairs and goes down the stairs on his bum. He did fall a lot.

Alan was observed and treated by an Occupational therapist (OT).  Alan was not showing hand dominance, required hand-over-hand for all needs, including utensil use, activities with crayons, overall, Alan wasn’t interested nor interacted with his peers, and was falling short of the gross/ fine motor skill development necessity milestones.

Alan was observed and treated by Speech and Language Pathologist (SLP).  Alan would use some high-pitched vowels.  He did not seem to understand labels of objects and didn’t even follow one step commands and did not know his body parts.

We took the next step and had Alan assessed at DEVELOPMENTAL ASSESSMENT AND CONSULTATION SERVICES (DACS), located in Oak Ridges, Ontario.  Alan was seen in the DACS Clinic with both of us (his parents), our early interventionist and Alan’s older sister Rachel accompanied.

DACS SUMMARY AND RECOMMENDATIONS:

In summary, Alan is a sweet, now almost 3-year-old boy who was first seen in the summer of 2009. At that time, based on the informal observation, the concern about autism was raised. Further assessment was carried out. Based on this assessment, Alan did meet criteria for a diagnosis of Autistic Disorder and on the spectrum. Alan certainly had a speech and language delay, however, more significant is that he does not use many other methods to communicate with others. That is, he does not compensate for his language delay by using gestures including pointing. He does use an atypical way of communicating by using someone hands as a tool to carry out activities for help. Most of the time, he did not readily respond to his name. He has a difficult time using his eye contact to engage others. In general, he is very difficult to engage in play. It is very difficult for Alan to make his needs known to others as he does not have a very effective way of requesting. In terms of Alan’s play skills, he certainly is delayed in this area and is very weak in using the important skill of imitation to help with further learning. Overall, he is Global Developmental Delay (GDD).

The following recommendations were made:

Alan’s family is encouraged to share his diagnosis with those who will be working with him. This will help in setting appropriate goals and developing specific strategies and will also give the family access to ASD services.

Our community partners, Early Intervention Services and York Region Preschool Speech and Language Program are skilled in working with preschoolers who have an autism spectrum disorder and their families. These services will continue to assess Alan’s development for the purposes of goal setting and revision of the treatment plan.

Alan’s Early Interventionist will support the family in accessing the resources recommended below.

Alan’s ongoing medical care and management should be discussed with the Pediatrician.

  • Learning about Autism Spectrum Disorders is recommended for Alan’s family. There are a variety of resources available including parent workshops, articles, videos/ DVDs and books as well as many local, national and international conferences. Parents can access these through the Geneva Centre for Autism, Kerry’s Place, Autism Ontario York Region Chapter, Parentbooks and Central East Autism Program.
  • Meeting with other families who have children with ASD is often helpful.
  • For the family’s information, Intensive Behavioural Intervention (IBI) which is specific form of Applied Behavioural Analysis (ABA), is frequently used in the treatment of individuals with autism. This type of intervention can address needs in the areas of: attending for adult-directed activities and table-top work, responding to directions and doing non-verbal cognitive activities such as puzzles. The family can contact the Central East Autism Program offered through Kinark Child and Family Services at 1-888-4-KlNARK to get on the waiting list for government-funded IBI. Private resources can be explored by using the ABACUS link from the Autism Ontario website.
  • Applying for Special Services at Home/ ACSD funding is recommended. This funding can be used for a variety of purposes including hiring a “mediator” to work on specific skill areas with Alan or to provide respite to Alan’s family. Contact information is provided in the resource package.
  • Information regarding respite services such as camps and in and out of home respite programs can be found at www.respiteservices.com.This site also includes listings, by area for CHAP (Community Helpers for Active Participation) workers.
  • A Disability Tax Credit is available to qualified persons through the Canada Customs and Revenue Agency. A form (T2201) will be provided to the family in the resource package.
  • The Easter Seals incontinence supplies grant program provides monetary support for the purchase of diapers/ incontinence supplies for children between the ages of three and eighteen. For contact information, refer to the resource package.
  • In addition to the services that they are currently providing, York Region Early Intervention Services can support Alan family in accessing the above recommended resources that are specific to a child with an autism spectrum disorder.
  • Participation in recreational activities is important for Alan. The family can contact their local Parks and Recreation office regarding current program options such as camps and swimming lessons. York region offers an inclusive recreation resource service. See the resource package for brochure.
  • Continued participation with York Region Speech and Language Program is recommended in order to work on expressive language, receptive language, social communication and play skills. The manual More Than Words by Fern Sussman may be a helpful resource to encourage these skills.
  • Alan was noted to be starting to imitate some actions/ words. Imitation is an important skill and a foundation for learning. This ability should be encouraged and reinforced.
  • Once Alan has entered the school system, a cognitive assessment to assist with programming should be discussed with their child’s principal with a view to determining when this service should be accessed. Between the ages of 5 and 9 years of age is suggested.
  • Alan will benefit from continued participation in a nursery school or childcare. The program should be highly structured and routine based with opportunities for peer interaction and communication.
  • The consultation services of the early intervention occupational therapist are recommended to address Alan’s sensory, daily living and fine and gross motor skill development needs. If ongoing treatment is required, a referral to the Community Care Access Centre can be facilitated by Alan’s early interventionist.
  • Upon registering Alan for school, the family is encouraged to share this report in order to facilitate a discussion regarding the most appropriate supports and services for Alan. Referral to the school board autism team should also be considered.
  • In a small percentage of children diagnosed with Autism Spectrum Disorder, there is an associated genetic disorder. It is recommended that Alan follow up with his pediatrician for a physical examination looking for dysmorphic features and/or neurocutaneous findings. Karyotype, Fragile X and TSH are recommended.

Although the DACS team does not provide routine follow-up, they are available for consultation to the family or Alan’s physician regarding any questions or concerns relating to his diagnosis or ongoing management. Inquiries can be directed to the DACS specialty services.