First Steps After Receiving An Autism Diagnosis
You have just learned that your child has been diagnosed with autism spectrum disorder. For some parents, the news comes as a shock, while other parents may have been expecting it. However, almost all parents who receive this diagnosis for their child struggle with reimagining their childs future with this pervasive developmental disability. You are not alone, and it is normal to feel this way. The important thing to know is that, although there is no known cure for autism, there is hope. Your child will be able to learn, grow and gain new skills within their potential. The important first steps are educating yourself about the diagnosis, adjusting the childs home environment to best meet their needs, and seeking professional therapeutic services.
What is autism spectrum disorder?
As the name suggests, children with this diagnosis fall along a spectrum of symptoms that can vary from children who are fairly verbal and described as high functioning to those who have no language abilities and are described as lower functioning. Your childs symptoms and abilities will fit into one of three diagnostic levels to indicate the severity and where they fall on the spectrum:
Level 2: This level requires substantial support. These children may have some verbal or cognitive deficits, and their social impairments are apparent even with supports in place.
What can I do at home to help my child?
After An Autism Diagnosis
Taking these steps will go a long way in your journey after an autism diagnosis. Though this is a journey, there is no finish line. Autism is life long, but with intervention and dedicated family, things will go much smoother for your child.
Are you in need of more personalized autism parenting advice? If so, take the opportunity to schedule a free autism parent coaching session. Get answers and strategies to help your child along with personalized coaching for you.
Take Care Of Yourself
We learn it in flight safety videos: put on your oxygen mask before you assist others. Although it seems obvious, its easy to forget. You simply cant take care of anyone if you dont take care of yourself first.
Make sure to exercise and eat well. Relaxation techniques like meditation can also be good for stress management. Set up an emergency contact that you and your child are comfortable with, that you can call when you need help.
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When Is A Child Diagnosed With Autism
Most children start to show signs of Autism Spectrum Disorder between the ages of 12 to 18 months old, however, most experts will not evaluate children for autism until they are at least 24 months old .
And most pediatricians are very observant and know the signs and symptoms to look for in children with Autism Spectrum Disorder. However, getting a diagnosis can vary from child to child. It really all depends on if your child is showing specific signs.
For example, we started seeing signs of Autism Spectrum Disorder in our daughter from the time she was 3 years old but were not able to get a diagnosis until she was 7 years old. The biggest reason for this is that girls are harder to diagnose with high functioning autism than boys.
And like my daughter, I went over 26 years without knowing that I too have Autism and have just recently been diagnosed.
On the other hand, my son who started showing signs of Autism between ages 1-2 years old was diagnosed at 3 years old.
You see getting a diagnosis can be different for everyone, but the sooner you get a proper diagnosis the sooner you can help your child.
Your Autism Is What Makes You Unique
First, an ASD diagnosis in no way changes who you are. It does not make you any less amazing than you were before. Your neurodiversity is just one characteristic of yourself that sets you apart from everyone else. Its what makes you UNIQUE. Unfortunately, many neurodiverse individuals experience a variety of different microaggressions or traumas throughout their life. They are often bullied or taken advantage of. Often, their sensitivities or challenges are dismissed. This makes them feel very othered and different. Perhaps, you longed to fit in so you tried to hide these parts of yourself and conform to the world around you. So, you may have felt shame over not quite fitting in with your peers.
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Every Day Counts Every Dollar Counts
For children like Logan, access to an early diagnosis can be life-changing. A monthly, tax-deductible donation can help ensure that families dont miss out on the vital services they need – it could even protect their education by providing an Aspect school sponsorship.
Every donation from our powerful community of supporters will contribute towards our goal of creating a world where no one on the autism spectrum is left behind.
How Is Autism Managed
If your child is diagnosed with autism, you will be guided through the various treatment options. There are education programs and support services available for children with autism and their parents or caregivers from a number of organisations such as Autism Spectrum Australia.
Treatments used to manage autism are best started as early in a persons life as possible. Specific symptoms and social skills can be improved with the right support and programs. Because everyone with autism is different, the best results are obtained from a treatment program specifically tailored to their individual needs.
Language and social skills are taught through intensive educational programs and behavioural therapies. Speech pathology focuses on developing communication and social skills. Occupational therapy concentrates on sensory motor development, such as learning play and fine motor skills, as well as how to cope in social situations.
Public and private schooling options are available for children with autism. Find out more about schooling options on the Autism Awareness website.
Sometimes claims are made about treatments that are misleading. Avoid treatments that offer a cure or recovery as there is no evidence to support these claims. Ensure that the treatments and supports you choose are informed by evidence.
Autism Awareness Australia provides self-care tips and helpful links and resources.
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Autism Diagnosis: What To Expect
Theres no single test for autism. Instead, autism diagnosis is based on:
- watching how your child plays and interacts with others that is, how your child is developing now
- interviewing you
- reviewing your childs developmental history that is, how your child has developed in the past.
The National guideline for the assessment and diagnosis of autism spectrum disorders recommends that autism diagnosis should include 2 standard assessments:
- comprehensive needs assessment
- diagnostic evaluation.
If you think your child might have autism, its good to act quickly and make an appointment with a professional. For example, you could talk to your child and family health nurse, your GP or a paediatrician.
Talk With Family About Your Childs Diagnosis
One of the hardest parts of our children being diagnosed with autism spectrum disorder has been trying to explain it to our families.
Even though we were experiencing all of our childrens symptoms and signs, our families sometimes denied the diagnosis or didnt take the same safety and parenting measures that we set up in our home.
This is another reason that educating yourself and learning all that you can about your childs diagnosis is key to explaining it to your family.
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Create A Structured Environment
Autistic children often seek structured environments, routines, and work well when they have an established routine. They may have an emotional attachment to one specific toy, want to eat the same food, or wear the same clothes. However, there is a fine line between routine and obsessions or rituals.
It is important to differentiate between rituals and routines after learning about your childs autism diagnosis because enabling rituals may cause them to have a meltdown if something unpredicted happens.
Having a schedule can help your child throughout their day but you should leave room for new activities and make small changes as you go. Add extra time to help in the schedule for unforeseen circumstances and to help your child adjust.
Tests And Tools For Diagnosing Autism
When health professionals are doing comprehensive needs assessments and diagnostic evaluations, they use a range of tests and tools.
These tools include the Diagnostic and statistical manual of mental disorders . DSM-5 uses the term autism spectrum disorder. It lists signs and behaviours and states how many of these must be present to confirm a diagnosis of autism spectrum disorder.
Health professionals also use the following screening and diagnostic tests and tools.
Screening tools Professionals use screening tools to decide whether your child has enough signs of autism to go on to a full assessment. Some professionals also use these screening tools together with their own professional judgment to make a diagnosis. Screening tools include:
Other tools Sometimes professionals use other tools to find out what strengths and difficulties your child has. These tools might not identify every autistic child, especially those who have milder signs of autism. These other tools include:
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Arranging An Autism Assessment
If you are referred for an assessment, it should start within 3 months and be done by a team of people who are specialists in autism. One person in this team should be your case coordinator this means they are in charge of:
- making sure you and your family know what will happen and when
- answering your questions
- getting information or support for you and your family
- collecting information to help the assessment.
- talking to you about how information about you and your family is shared.
Terminology And Distinction From Schizophrenia
As late as the mid-1970s there was little evidence of a genetic role in autism while in 2007 it was believed to be one of the most heritable psychiatric conditions. Although the rise of parent organizations and the destigmatization of childhood ASD have affected how ASD is viewed, parents continue to feel social stigma in situations where their child’s autistic behavior is perceived negatively, and many primary care physicians and medical specialists express some beliefs consistent with outdated autism research.
It took until 1980 for the DSM-III to differentiate autism from childhood schizophrenia. In 1987, the DSM-III-R provided a checklist for diagnosing autism. In May 2013, the DSM-5 was released, updating the classification for pervasive developmental disorders. The grouping of disorders, including PDD-NOS, autism, Asperger syndrome, Rett syndrome, and CDD, has been removed and replaced with the general term of Autism Spectrum Disorders. The two categories that exist are impaired social communication and/or interaction, and restricted and/or repetitive behaviors.
The Internet has helped autistic individuals bypass nonverbal cues and emotional sharing that they find difficult to deal with, and has given them a way to form online communities and work remotely.Societal and cultural aspects of autism have developed: some in the community seek a cure, while others believe that autism is simply another way of being.
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Getting A Handle On It: Educating Yourself
No matter the dilemma, in the end there’s only one thing to do: Get up and keep going. This is even more true when you have a child who needs intervention, and soon.
In the case of a newly-diagnosed child, this process usually begins with educating yourself about ASD, something you may have begun before your child ever received a formal label. There are many books, articles, DVDs, workshops, and conferences about ASDs, not to mention websites like this one. A good place to begin is right on this site:
The more you learn, the more empowered you will be to make wise decisions, educate others and advocate for your child and your family.
Please keep in mind, as you take on this task, that you cannot possibly learn everything all at once. Take your time, and recognize that there are many varied opinions about what causes ASD and how to treat them. There are also many unknowns. In fact, part of becoming informed about ASD entails knowing the limitations of our current knowledge and learning to cope with ambiguity until research provides us with more definitive answers.
Meeting The Criteria For Nhs Services
Schools and families are often unaware of how to support the child/young person. In these situations, the child/young person often does not meet the service criteria to be included on the NHS caseload for services such as Occupational Therapy, Speech & Language Therapy, or CAMHS . They and their families are left with no support. The difficulties that families experience are often glossed over and there is very little support available to them. These children/young people can slip through the net, but research shows us their difficulties are highly unlikely to resolve without appropriate intervention.
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Discovering Who We Really Are Behind The Masking
After spending our lives masking, it can become intimidating trying to figure out who we really are.
It can feel as if we are reverting into an autistic child and appearing even more autistic. Some of us may feel we are becoming more autistic just because we received a diagnosis.
As we unmask, we have to learn who we really are so we can craft a life that is uniquely ourselves.
It can be worth it for many of us to begin the process of self-discovery.
What Can Happen Without Intervention
In fact, the difficulties often grow, manifesting in increasing levels of anxiety, perfectionism, difficulties filtering out internal and external distractions, developing a fantasy world as a strategy to reduce anxiety and fear, misunderstandings in the playground, or arguments and fights etc.
Research has found that there is a strong link between ASC and mental health difficulties, e.g. depression, self harm, OCD, etc, yet families and schools can struggle to get appropriate help to prevent this.
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Can You Develop Autism In Adulthood
Many have speculated about what causes autism, from crazy theories about vaccines causing autism up to realistic reasons like genetics. We may also wonder if adults can develop autism later on in life.
According to a study on NIH.gov, Scientists believe that both genetics and environment likely play a role in ASD. The NIH fact sheet says, Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified. The theory that parental practices are responsible for ASD has long been disproved.
While people speculate autism has environmental causes, no one actually knows what in the environment could cause someone to be born autistic, or if there even are environmental causes to begin with. The one thing we know for sure is that autism is genetic.
With what scientists know about autism, we are more than likely simply born autistic.
As adults, we may naturally unmask without realizing it, or we could just notice our autistic tendencies more than we did as children and teenagers.
Build A Support Network
Remember, youre not alone. Build up a support network. This could include a support or social skills group, an autistic friend, a friend or family member who learns about autism with you, an individual therapist who specializes in neurodiversity and can help you process your autism identity. Also, they can help you process any other challenges, such as social anxiety or trauma, and help you reduce the distress in your life. Ultimately, getting this support and learning these skills will improve your quality of life.
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Christmas & Birthdays Are Hard
I say this from experience, birthdays and holidays are hard! The noise, the new sites, and wrapping paper everywhere will likely trigger a meltdown from your child.
Your family will buy gifts that your child has no interest in and your child may have no interest in opening presents. Make sure to have a calm place for your child to go and unwind when they get overwhelmed.
Learn To Listen Without Your Ears
Learn to listen with your eyes. Having a delay in speech development or being nonverbal does not mean your child isnt communicating. Everything we do, even silence, is communication. The sooner you understand how your child communicates, the easier it will be to interact and respond to their language.
Speech therapy may focus on a number of aspects, including:
- nonverbal communication
- social pragmatics
Just remember: Everything your child does it trying to tell you something, so be sure to listen!
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My Child Was Diagnosed With Autism Spectrum Disorder Now What
Once your child has been diagnosed with any type of condition, the most common question parents ask is Now what? Its no different when your child is diagnosed with Autism Spectrum Disorder.
Parenting doesnt come with a guide on how to raise your children and when your child has autism learning how to parent them can be even more difficult.
This page may contain affiliate links, however, I will never recommend anything that I do not believe in and use myself. You can read more about my disclosure policy here. I am not a medical professional of a doctor of any kind so always check with your childs pediatrician before using these tips.
Prepare For Early Intervention
While there is a critical period in child development from ages 0 to 3 years, you should look into different therapies for your child at diagnosis. There is no cure for autism, but there are therapies that can help create foundational skills for your child to build on as they grow and develop.
While early intervention is recommended, its never too late to determine if your child is eligible for certain therapies, including:
- speech therapy
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