Category Archives: Autism Information Database

等待孩子診斷評估時可以做些什麼 What to do while waiting for your child’s assessment

因為卑詩省公費自閉症診斷的等候期目前長至於兩年,所以家長一定要在一開始察覺孩子發展異常時立刻行動。有時有些孩子在轉診後發展突然有顯著的進步,這時你可以選擇取消你的約診。 因為等候時間漫長,許多家長會選擇做私人診斷。但目前連私人診斷也需要排隊等候,等候期大約是四到九個月不等。 

截至2021年十月此文發表時間止,Variety – the Children’s Charity 為財務狀況有限的家庭提供私人自閉症診斷的資金。因為收到許多資金申請表,目前資金申請的處理時間大約是八到十周左右。 想了解申請資金的詳細資料,請見 ACT’s Information Database.   另有 Jordan’s Principle 為居住在保留區的原住民提供私人診斷的基金。想了解 Jordan’s Principle,請見 ACT’s Information Database

 

等待時你可採取的積極行動

及早診斷固然重要,但家長在等待診斷時也是有許多事可以做的,尤其是家長對孩子因溝通能力遲緩造成的許多特殊行為表現還處於一知半解狀況的時候。 ACT在此頁面收集了許多資訊和資源,希望能幫助家長改善家庭生活功能,度過這段艱難的時期。 

很可惜的,下列許多的公立資源都有等候期,所以家長一定要盡早聯絡開始排隊。如果你對孩子的發展有疑慮,請記得:不管孩子最終的診斷為何,家長本身學習如何積極介入、幫助孩子發展溝通能力是非常重要的。

確認 BCAAN (卑詩省自閉症評估網) 確實收到孩子的轉診要求

我們強烈建議家長與卑詩省自閉症評估網 BCAAN 的 Regional Coordinator(區域聯絡人) 確認對方有收到孩子的轉診要求,以避免轉診過程中出了任何差池而耽誤時間。同時你也可以確認等候時間並詢問對方是否需要其他相關資料。這個動作雖然無法加快時間,但至少能確實避免不必要的延遲。

如果在等私人診斷可詢問是否可上 cancellation list 

詢問私人診所或專家是否有 cancellation list,代表如果有其他人取消約診,即會通知時間有彈性的人填補空缺時間。

準備一個文件夾保存紀錄

準備一個文件夾,保存和整理孩子的醫療紀錄和其他相關的發展或行為評估報告。 電子檔案更為理想,因為更方便電郵分享。你也可以開始觀察並記錄孩子在不同環境與不同人的行為表現,筆記或影像紀錄皆可。 這些資訊在將來診斷醫生詢問特定問題或需要填寫問卷時都會非常有幫助。

記錄你與不同機構和不同服務人員的聯絡過程。當你與下列許多服務人員和機構聯絡時,很容易會忘記或混淆服務。最好詳細記錄相關資料,包括機構名稱、聯絡人姓名、聯絡日期和溝通的內容。

了解使用社區內的支援服務

語言治療服務

各地衛生局皆有為五歲以下有語言遲緩的兒童提供免費語言治療服務。你可以詢問你的家庭醫生或直接連絡衛生局。此項服務可能有等候期,衛生局會通知你語言治療師何時可以見你的孩子。

了解居住地衛生局的聯絡方式,請見 Regional Health Authorities

嬰幼兒發展計畫與原住民嬰幼兒發展計畫

嬰幼兒發展計畫(IDP)是為了幫助三歲以下確診為或疑似有發展遲緩或身心障礙嬰幼兒的社區服務計畫。原住民嬰幼兒發展計畫服務的年齡層則延展到六歲,服務包含能反映原住民傳統文化、習俗、信仰與價值觀。

兩項服務都提供居家早期預防及干預服務。 顧問協助家庭面對發展障礙和學習幫助孩子發展的能力、提供所需的教材或工具、和建立家庭與社區服務的連結。

根據孩子的需求,顧問可以介紹其他的社區服務,包括兒童發展援助計畫和早期療育服務。家長可以要求此項服務或由公共衛生護士、家庭醫生或專科醫生轉介。此項服務長期經費短缺,所以家長要盡早開始轉介上等候名單。 

尋找當地嬰幼兒發展計畫的聯絡方式,可搜尋 Healthlink BC Directory

兒童發展援助計畫與原住民兒童發展援助計畫 

兒童發展援助計畫(SCDP)與原住民兒童發展援助計畫(ASCD)是為了提供12歲以下有發展遲緩或身心障礙的兒童相關支援,以利他們參與社區內托兒服務的社區計畫。 SCDP 在有照的托兒中心,幼兒園或課後托兒中心協助托兒教職員,家長及孩子。某些地區的服務可延展到 13 至19 歲的青少年。 家長可以自己要求服務或透過社區服務或醫療專業人員轉介。此項服務也是長期經費短缺有等候期,家長務必要及早開始轉介。

尋找當地的兒童發展援助計畫,可搜尋 Healthlink BC Directory

早期療育計畫 

早期療育計畫(EIT)提供社區內的職能治療,物理治療,語言治療和支援服務。 此計畫是針對出生至學齡前,已有或可能有發展遲緩或身心障礙的兒童。家長可以自我轉介或透過專業人士如醫生或護士轉介。 這項計畫經費來自於兒童廳,通常由當地的兒童發展中心提供服務。如同上列服務,因為經費有限,通常家長都要等候服務。 

要尋找你所在地的 EIT 計畫,可以詢問你的公共衛生護士,家庭醫生或是當地的兒童廳辦公室。

許多家長因為不堪長期的等候,會考慮尋找私人的治療師,但同時也有許多家庭無力付擔私人治療服務。如果你考慮尋找私人治療師,可以參考 Registry of Autism Service Providers (RASP) 名單。

兒童與青少年心理健康(CYMH)服務

兒童與青少年心理健康是(CYMH)一項由兒童廳提供的自願性免費社區服務。卑詩省境內約有多100多個診所提供免費心理評估和治療方案。服務項目通常包含心理諮商,社工服務,教養支援和精神醫療服務。但是除非孩子處於危機狀態,否則一般都需要等候服務。

想了解更多 CYMH 的服務,請見 Child & Youth Mental Health Intake Clinics

學習何謂自閉症及其治療方式

了解何謂自閉症可以幫助你在孩子診斷過程中更有效的提問。學習不但可以幫助你在孩子確診後立即採取行動,更可以提供你實用的方法解決日常生活所需面對的困難,如睡眠和如廁訓練這些影響許多孩子的常見問題。 不管你孩子最終診斷為何,下列的資源都會對你有極大幫助。

注意: 確保你的資訊來源是由有資格的研究學者或臨床專家所提。網路上充斥著許多所謂的奇蹟療法, 不但浪費金錢更浪費寶貴的時間。 ACT’的自閉症資料庫 篩選了上千樣資訊,包含與自閉兒童,青少年,成人及家庭息息相關的多樣主題,供大家參考。努力學習的同時,請注意下面幾點:

  • 了解那些問題是自閉症,那些不是。 你的孩子無論如何就是一個孩子,不管最終診斷為何,某些問題(如腸胃消化問題或嚴重行為問題)都應該重視處理。
  • 從孩子學習。 每個孩子生來皆不同,每個自閉兒也是如此。 你可以開始觀察與記錄孩子的日常表現,這些紀錄可以幫助你了解孩子的行為模式,發展與學習的進步。 不管孩子是否診斷為自閉症,你都可以將這些紀錄與學校老師或其他治療師分享,幫助他們了解你的孩子。
  • 開始研究治療方案。不管最終診斷為何,評估結果很有可能發現孩子有發展遲緩或社交溝通上的障礙,需要行為干預,語言治療或職能治療。評估診斷的醫生或專家通常會提供家長有關治療方案的建議。 如果你想立刻開始治療或是想先做準備,可以參考 ACT的新診斷中心,其中包含科學認證且實用的資訊,幫助卑詩省內的家長為孩子建立有效的治療團隊。 

如何在家幫助孩子 

家長和其他家庭成員有很多方式可以在家庭或社區環境裡協助孩子學習成長。專家的幫助固然重要,但事實上,你的孩子與你相處的時間比與治療師相處的時間要長出許多。 以下的網上資訊,包括 ACT 的線上視頻,都可以提供你許多的方法,讓你在等候診斷期間也能幫助孩子成長。 

如果你孩子已接受上述的社區服務,可以與其中的專業人員分享你對孩子的觀察,討論你的疑慮並請教他們是否能建議一些方法讓你在家與孩子練習。

以下是一些在 ACT’s Information Database 自閉症資料庫和 Autism Videos @ ACT 線上視頻裡可找到的免費又實用的資源::

ACT的職員可以引導你尋找類似上述的資源。 我們也可以提供資源幫助你為神經發展障礙孩子爭取縮短等候各項服務的時間。請電郵 [email protected] 聯絡我們。 ACT的臉書 也為家長提供各種相關訊息。 

另一個提供個別諮詢和轉介服務的單位是兒童廳的自閉症諮詢服務,他們同時也管理 Registry of Autism Service Providers (RASP) 名單:

Autism Information Services British Columbia (AIS BC)
3688 Cessna Drive, Richmond, British Columbia, V7B 1C7
Toll Free Line: 1-844-878-4700
Email – Info: [email protected]
Website: autisminfo.gov.bc.ca/
RASP List: autisminfo.gov.bc.ca/rasp/search

 ACT另有 Registry of Autism Service Providers 相關資訊網頁供家長參考。

What to do while waiting for your child’s assessment

blankIt is important that parents start the process as soon as concerns emerge as it can be as long as two years to wait for a publicly-funded assessment through the British Columbia Autism Assessment Network (BCAAN).  If your child makes sudden developmental gains, which does happen, then you can cancel the appointment. Because of the long waiting lists, many parents decide to pay for a private diagnosis, but those waiting times are also long, from four to nine months. 

As of October 2021, funding for private assessment is available through Variety – the Children’s Charity for families with limited ability to afford the cost of private assessment.   Their current processing time for grant application is about 8 to 10 weeks because of the volume of applications received.  For information on Variety’s grant for private autism assessment, please see ACT’s AID Search.   For Indigenous children live on reserve, there is also Jordan’s Principle providing funding for private assessment.  For more information on Jordan’s Principle, please see ACT’s AID Search

 

Positive steps you can take while waiting

While an early diagnosis is important, there are many things that parents can do while they wait. This is especially true if they are struggling to understand their child’s challenging behaviors, which often stem from their communication delays. ACT has compiled information and resources on this page to help families navigate this stressful period with a focus on improving family functioning.

Unfortunately, many of the publicly funded services listed below also have waiting lists, so it is important to contact them as soon as possible. If you have concerns about your child’s development, remember that learning how to engage your child in developing their communication skills is important, regardless of their eventual diagnosis.

Ensure your referral has been received by BCAAN

It is a good idea to confirm with the Regional Coordinator for the BC Autism Assessment Network (BCAAN) to make sure that they have received a referral for your child – in case the doctor’s office has not sent it in. You can also find out about the latest wait time and if there is any additional information they need. This may not speed up the process, but will definitely avoid any unnecessary delay.

Get on the cancellation list if you are waiting for a private assessment

For a private assessment, ask if the clinic keeps a cancellation list which may allow an earlier appointment if you have flexibility.

Start a folder and keep a record

Organize and keep in a folder your child’s medical records and any previous developmental or behavioral evaluations. Electronically is preferable, as you can share them more easily. You can also keep your own notes and collect video clips observing your child’s behaviour in different places with different people. These will become very useful when the diagnostician requests specific information or when you need help answering the questionnaire.  

Keep a record when you contact service providers – it can be confusing to deal with the many different organization/services listed below. It is helpful to take notes on which organizations you have contacted, including the name of the person you spoke with, the date, and what they said. 

Access services and support within your community

Speech-Language Therapy services

Free speech-language therapy is available through local health units for children aged five and under who are language-delayed. You can ask your family doctor to make a referral or contact them directly. You may be put on a wait list and contacted when a Speech-Language Pathologist becomes available.

To find your local health authority, please see Regional Health Authorities

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Infant Development Program and Aboriginal Infant Development Program 

The Infant Development Program (IDP) is designed for children under age three who have either a developmental delay or disability, or are at risk of developing them. The Aboriginal Infant Development Program (AIDP) continues until age six and includes activities and materials that reflect local Indigenous cultures, customs, beliefs and values.

Both programs provide home-based prevention and early intervention services. Consultants assist families in acquiring the tools, skills and community connections needed to promote optimal child development and support developmental challenges.

Depending on the needs of your child, a consultant can link you to other services, including Supported Child Development, Aboriginal Supported Child Development, and Early Intervention Therapy. Referrals can come from either parents or professionals, such as public health nurses, doctors and others. As both programs are chronically under-funded, do not delay in seeking support as in many communities there are waiting lists.

To find your local Infant Development Program, you can search Healthlink BC Directory

Supported Child Development Program and Aboriginal Supported Child Development 

Supported Child Development (SCDP) and Aboriginal Supported Child Development (ASCD) are community-based programs intended to assist families of children who require extra support to attend their community childcare setting. SCDP provides support for childcare staff, families and their children, up to 12 years of age, in licensed daycare, preschool or out of school care programs. Services for youth 13–19 years are available in some communities. Self-referrals from parent and guardians or referrals from community and medical professionals are accepted. Both programs are chronically underfunded and waiting lists are long. 

To find local Supported Child Development programs, see Healthlink BC Directory.

Early Intervention Therapy Program 

Early Intervention Therapy Program (EIT) provides community-based occupational therapy, physical therapy, speech-language therapy and support services for eligible children and their families. These services support children from birth to school entry who have, or who are at risk of, developmental delay or disability. The EIT Program accepts referrals from families and professionals involved with the child and family. Often these services are provided through Child Development Centres but funded through the Ministry of Children and Family Development. Unfortunately, services are often limited by financial constraints and there are waiting lists. 

To find the EIT program in your area, ask your public health nurse or physician, or contact your local Ministry of Children and Family Development office. 

Waiting lists for EIT services often force families to hire therapists, privately, but many families cannot afford the fees involved. The Registry of Autism Service Providers (RASP) is a good source of therapists who can provide fee for service. 

Child and Youth with Mental Health (CYMH) services

Children and youth can access free and voluntary community-based mental health supports and services from Child and Youth Mental Health (CYMH), provided through the Ministry of Children and Family Development. There are about 100 intake clinics in BC providing a range of mental health assessment and treatment options at no cost for children and youth and their families. The services usually include counselling, social work, parenting supports, and psychiatric services.  However, families do experience significant waiting times unless their child is in crisis.

For more information on CYMH services in your area, please see Child & Youth Mental Health Intake Clinics

Learn more about autism and treatment options

Learning more about autism will help you develop questions to bring up during the assessment. It will also help you prepare to take action if your child is diagnosed with ASD as well as giving you practical strategies that can help you resolve challenges. Issues including toilet training and sleep affect many children with developmental delay. The resources below can help regardless of your child’s ultimate diagnosis.

A note of caution: it is important to make sure your information comes from credible sources provided by well-qualified researcher/clinicians. There are many promises of miracle treatments on the internet which can waste financial resources and vital time. ACT’s Autism Information Database (AID) has thousands of vetted resources on autism-related information. There are links to excellent international websites on a wide range of topics relevant to children, youths and adults with ASD and their families. While learning, it is helpful to:

  • Know the signs of autism, and what is NOT autism. Your child is first and foremost a child, and some conditions (i.e. Gastro-intestinal struggles or severe behaviors) should be addressed regardless of your child’s diagnosis.
  • Learn from your child. Every child is different, and every child with autism is different. Start keeping a journal of observations of your child. You can refer back to these to better understand your child’s progress and share them with teachers or therapists, whether your child receives a diagnosis or not. 
  • Begin researching intervention services. Whether your child gets diagnosed or not, the assessment may reveal a developmental delay or social communication challenge that could benefit from services such as behaviour intervention, speech therapy, or occupational therapy. The professionals conducting your child’s assessment can provide you with recommendations on intervention your child needs.  For families who prefer to get the ball rolling on intervention service or those who want to know what to expect after the diagnosis, ACT’s New Diagnosis Hub provides practical and evidence-informed information to help families in BC put an intervention program in place for their child. 

Ways of supporting your child at home 

There are many ways that parents and the extended family can help a child with developmental delays in the home and community environment. Experts are very helpful to provide direction but your child is with you much more than with consultants or therapists. Below you will find a list of online resources, including ACT videos, that can give you new insights on how to help your child while waiting for your assessment. 

Consult with community professionals (listed above) who are already working with your child, share your observations and concerns with them and ask for strategies you can implement at home to help your child.

Here are some free, practical and evidence-informed strategies from  ACT’s Information Database and Autism Videos @ ACT including:

ACT’s staff can direct you to helpful information resources such as those listed above. We can also provide you resources on how to advocate for an end to waiting lists for children at risk of neuro-developmental conditions. Email [email protected] to start the conversation. ACT’s Facebook page also provides news updates of interest to parents.

Another source of individualized support and/or referral services, is the Ministry of Children and Family Development’s information service, which manages the Registry of Autism Service Providers (RASP) list:

Autism Information Services British Columbia (AIS BC)
3688 Cessna Drive, Richmond, British Columbia, V7B 1C7
Toll Free Line: 1-844-878-4700
Email – Info: [email protected]
Website: autisminfo.gov.bc.ca/
RASP List: autisminfo.gov.bc.ca/rasp/search

Visit ACT’s Registry of Autism Service Providers information page for more on the RASP.