Autism Spectrum Disorder: The Journey After the Diagnosis
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From Visually.
Autism Spectrum Disorder: The Journey After the Diagnosis
diagnosis of autism
Autism in adults – getting a diagnosis of autism as an adult. Some tips from the NHS.
Autism Acceptance
Getting a diagnosis of autism (including Asperger syndrome) can be a really positive step. A lot of adults say their diagnosis has helped them to understand why they find certain things difficult, and also why they are especially good at some things.
Having a diagnosis also means you can get easier access to support and benefits. However, the process of getting a diagnosis can be difficult for adults.
The usual way to get a formal diagnosis is to go to your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism.
Here are some tips from The National Autistic Society (NAS) on how to present your case so that your doctor can see why you may have autism, and why having a diagnosis is helpful.
If you think you may have autism
When visiting your GP to discuss autism, make sure this is the only thing you are seeing your doctor about. If you try to drop it into a consultation about another subject, they may not address it fully. A good way to bring up the subject is to mention that you have been reading about autism or Asperger syndrome, or that you have been in touch with the NAS.
Describing your experiences
The autistic spectrum (the range of symptoms people with autism have) is very broad, and two people with the condition may have very different symptoms or traits. Most people with autism have the difficulties discussed below.
Difficulty with social communication
People with autism have difficulty using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice, as well as jokes and sarcasm. Some people with the condition might not speak or have fairly limited speech. They may understand what people say to them but prefer to use alternative forms of communication, such as sign language.
Difficulty with social interaction
People with autism have difficulty recognising and understanding people’s feelings and managing their own. They may, for example, stand too close to another person, prefer to be alone, behave inappropriately and may not seek comfort from other people. This can make it hard for them to make friends.
Difficulty with social imagination
Those with autism have difficulty understanding and predicting other people’s intentions and behaviour, and imagining situations that are outside their own routine. This can mean they carry out a narrow, repetitive range of activities. A lack of social imagination should not be confused with lack of imagination. Many people with autism are very creative.
If your doctor disagrees with your argument, ask for the reason why. If you don’t feel comfortable discussing their decision there and then, ask for another appointment to talk it through.
Why you may need an autism diagnosis
Diagnosis in adulthood can have advantages and disadvantages. Some people are happy with self-diagnosis and decide not to ask for a formal one. For those that do want a diagnosis, there are various benefits, according to the NAS. These include:
Understanding yourself
People with autism have often known for a long time that they have specific difficulties, but haven’t been able to explain them. They may have even been misdiagnosed. A firm diagnosis can be a relief, because it means they can learn about their condition and understand for the first time why they have difficulties.
Gaining the understanding of others
Many people suffer from constantly being misunderstood. When the people close to you understand why you find certain things difficult, it’s much easier for them to empathise.
Receiving the right services for your needs
Once a diagnosis has been given, you can access autism-specific services. Read more about autism in adulthood.
The NAS website has a range of diagnosis information, which can help you understand your condition.
You may also like to download their guide What Next? for adults who have already been diagnosed with autism.
You may also find this video of interest.
“Health and Wellbeing in Parents of Children with Autism Spectrum Disorder” – please help a student at Bond University with her research.
My name is Deanne Fernandes and I am currently completing a Master of 
Clinical Psychology Dissertation at Bond University under the supervision of Dr. Richard Hicks. I am conducting a research investigation into the effects of parenting a child with Autism Spectrum Disorder (ASD). I am specifically interested in the role of social support, parenting self-efficacy, and child interventions and education services in improving the psychological health and wellbeing of parents of children with Autism.
As part of this study, I invite you to complete a brief online survey that will take approximately 30-45 minutes to complete. I am seeking parents of children with at least one child aged 4-12 years, with a diagnosis of ASD. Participation in this study is completely voluntary and you may withdraw at any time without risking any negative consequences. If you choose to withdraw your participation in this study, the information you have provided will be immediately destroyed. You will not be required to provide your name, and all information collected in the study will be done so in a manner that ensures that your identity remains anonymous. Additionally, all the data collected in this study will not be made accessible to any person outside of the student researcher and supervisor working on this project. Data will be stored in a secured location at Bond University for a period of five years in accordance with the guidelines set out by the Bond University Human Research Ethics Committee.
It is anticipated that the data collected during this study will assist us in understanding what factors are most important for improving outcomes for parents that have children with Autism. Improved wellbeing of parents is linked to better care and therapeutic outcomes for children with ASD. Therefore, your participation in this study will enhance work towards incorporating these key components of positive parenting outcomes into treatment and intervention plans for families with children with ASD.
Click here to take the survey https://www.psychdata.com/s.asp?SID=166676
We thank you for taking the time to assist us with this research.
A diagnosis of autism! What was your first reaction on hearing the diagnosis of autism?
Advice for autism parents
When I started this blog a few years back I wrote a blog post describing our son’s autism diagnosis. You can read the story here.
In the five years which have passed so much has changed. Not always for the better.
But I still vividly recall the day of the diagnosis and the pain it caused. In fact it was the 70th anniversary of the German invasion of Poland if your interested. We got the diagnosis at around 11.30 in the morning. Again if you are interested.
My initial reaction was a bit of a surprise to me. Both my wife and I had expected it. In fact. looking back. I don’t suppose there was any other possible outcome. But hope springs eternal – as they say.
After the first few moments of bleak sadness my next reaction was anger. Not just at the way we were told. Though pretty inept I doubt it would have made a difference. It was as much the unfairness of it all. Why? Because in those days I really thought my son’s life was over before it had begun.
But it’s not. Not at all. Yes it is different sure and not always easy but we lead a full family life and John has developed in many ways.
But I still think about that day and wondered how typical I am.
So a couple of days ago I posted a question on our Facebook Page AutismTalk. The results were fascinating and I thought I would share some of them with you. The ones I’ve selected have been on the basis of being representative rather than anything else. Indeed at time of writing this post we have had over 320 comments.
It would be great if you would use the comments section below.
Jason was pretty relaxed “It wasn’t a big deal to me. I still love my daughter if she was autistic or not. Even though she is classified as special needs….i don’t see her that way. She is just Julie..my daughter…no more…no less. The world is a her doorstep!”
Another reader was similar to me “Broken.. Cried.. Blame my self… But he is still my little boy… And I’m proud of him.. Very proud of him….” said Silvia.
Angela shared ” Firstly it was relief…..not because my son has asd but because at least we had finally got some where and I knew I wasn’t going mad,….i had known from an early age that my son was autistic it has just taken a while to get anyone to listen…….but then the feelings of guilt,I couldn’t help feeling that it was my fault somehow….i still do get those feelings sometimes , but at least we can now fight for my son to get the correct help he needs…..i love my son with all my heart and wouldn’t change him for anything.”
” I held it together until I got in the car. Then quietly cried the hour drive home. My husband drove us in silence. We spent that day grieving normal, the loss of what we thought things should be like for our boy…only just 3 then. The next day we woke up ready to embrace everything with a positive and easy going attitude. We threw all expectations out the window. We accepted this challenge. We got educated, we embraced therapies, learned how to step inside him. Jonathan’s now 11. Doing great. He’s a happy, warm, loving, and brilliant boy. My gem ” said another reader.
Robert mentioned “Relief in the fact that I could tell family to back off that it wasn’t a discipline issues.”
Of course emotions are strong “I cried for like 2 hours in my car after my wife my son got back home . We went to the doc they told us she cried on the way home I ask God for stenght not to cry and be strong for her after we got home I told I had to return to work I got in my car and broke down and cried . I love my boy it more then 10 years for us to get pregnant . I never asked God why or have any bad feelings what I did tell God is that ok I love my boy and accept me with all my heart just please don’t let my do this on my own help me with your love if you do this with me I know I can see anything through . It been good my wife and are more like a team now with share all my son things therapies , doc visits were never alone on anything . There are the bad days really bad day but that’s why we’re a team if she feels she needs a brake or can’t go I’m like tag me I’m in ? But there are good day to and we both share them . He’s my boy ” I love you carlosmanuel I won’t change you for anything ”
Glorie told us “Relief in the fact that I could tell family to back off that it wasn’t a discipline issues.”
Not everyone was positive “Sad. Confused. Frustrated. Lost. Hopeless. I didn’t cry, I just developed severe anxiety and depression. I’m pretty sure I have no clue what I’m doing. God help us all.”
Pauline movingly said “pride and love and knowing i was right a mother knows her child best xxxx” and another said “My husband and I sat in our car in shock and said that no one would just slap a label on our son..we expected the same for him as our other son. We had to make adjustments over the years, it was not always easy, but he is now 21 and is an amazing young man.”
The view from people with ASD was interesting. Katheryn shares “Finally I have a reason why I was different and that I’m not alone ”
Anna was upbeat “My son and I heard the news together. He was not diagnosed (with Aspergers) until he was 17. We both looked at each other with that sudden dawning of understanding. Suddenly we knew the reason for all our struggles. We hugged and talked well into the night. And had many conversations about all of it.”
So what about you? What was your reaction?
| DesireeNicole | Relieved, Camren is my third son and I learned not to compare my children after my second cause I seen first hand all kids were different and they developed on their own time. But I knew something was different or special I call it about Cam. My older boys threw temper tantrums but camren has episodes and when we got his diagnosis our life became easier, his and mine because we learned how to communicate and compromise with each other and his therapy’s and teachers I am forever grateful for. |
| MichelleBarger | When I first got my son’s diagnosis I thought of my pregnancy, I ate lots of sea food. Then thought of the delivery, his umbilical cord was wrapped around his neck when he was born and he also swallowed merconium before he came out. Then I thought about his development when he was growing up. I saw signs but no one would listen. Finally got a Dr to listen but only after he was hospitalized with RSV at 15 months old and I got mad at the hospital staff. |
| BevLeroux | Asperger’s – My Story September 5, 2010 – November 5, 2014 I had been researching autism since 2005 when my young granddaughter was identified with ‘developmental delays’. I lived my whole life not knowing I was on the autism spectrum, struggling to fit in and hold down a job as a single parent. Managed to do this by the skin of my teeth and retired in December 2010 at 65, just two months after my diagnosis. SELF-IDENTFICATION, FIRST! In September 2010, I came across a local Asperger’s group on Meetup.com that provided a list of websites, articles, videos and books. I really connected with Michael John Carley’s “Asperger’s from the Inside Out”. That very day, between videos and books I filled 30+ pages in a notebook: “Yes, that’s the way I think. Yes, I do that. Yes, that’s what it feels like. Yes, yes, yes, yes, yes!” Watershed moment. Receiving an Asperger’s diagnosis, in October 2010, was a powerful In addition, I realize now I had been self-medicating |
Autism support 1 – What advice would you give to somebody who child has just been diagnosed with autism?
Advice for autism parents
During and after his diagnosis my wife and I found it very hard. One reason, perhaps, is that we had little contact with people who had been raising children on the spectrum. Sure we knew people like us whose kids had just been diagnosed but were not in touch with people who while still on the autism journey were a long way down the round.
So I thought it would be useful to start a conversation on our Facebook page AutismTalk asking one very simple question – “What advice would you give to somebody who child has just been diagnosed with autism?”.
Firstly the results were amazing so we have decided to run a blog post sharing some of the responses with our readers. But it would be great if you could share any advice you might have in the comments section below.
One reader shared “Never give up. Everything takes time, and in the end every moment is worth it! I was told my son wouldn’t do this, or wouldn’t do that, and he has overcome every obstacle they said he wouldn’t, and every day he does something I was told he’d never do. Like talk. 5 years of therapy, in and out of school, and he speaks!”
Another said ” One day at a time and take thw good with the bad. My son has jus had a massive meltdown bt ten minutes later impressed me soo much because he randomly brought his juice PEC to me because he wantsd a drink… first to he ever communicated off his own back. Its an emotional roller coaster. I was crying half hour ago now were very happy proud and giving my son lots of love and praise!”
” A label is just that… It doesn’t change who your child it, it just gives you a direction on what you can do to help make their days/life easier”
“That people without an autistic child will most probably be ignorant to what autism means.. Don’t worry about there opinion on your child.. They will never understand. ”
“From a dads perspective stay positive and acceptance of the condition. Then move on and fight for everything”
“Remember to put yourself in your child’s shoes and always be patient. I always think to myself, if I’m anxious, how must he be feeling x”
“Don’t believe everything they tell you each child is different and they are capable of learning.. It’s called repetition. If you give them a break because they are autistic they are going to catch on. But also be patient as certain things can set them off. Just don’t do things you know is sure to upset them.. But discipline is a must they are capable of understanding. Just takes more time and patience”
“EARLY INTERVENTION + Learn to be “at peace” with and “accepting of” your child just the way they are.”
“autism is a special gift their no different than anybody esle just special in their on ways .. Take one day at a time.. There will be good days and bad but you just got to stay strong . They will bring so much joy to your life promise..”
“Take the time to really, really observe your child, see where he struggles and think what you can do to help. This sounds so very simple and so very obvious but when you’re stressed, sleep deprived and struggling to communicate it’s harder than you think. Seven months after official diagnosis I’ve finally concocted some charts and aids that help my son understand the passage of time. Nothing else I saw quite fitted the bill – every child is different so try not to compare. Just work on building that bond and helping your child prepare for and cope with his world. xxx”
“It changes everything yet changes nothing at all. They are still your child and it’s just allowing you to change your parenting style to adapt to their needs to help them (and you) achieve theirs and your potentials! Stay calm and read as much about it as you can. Knowledge is power.”
“Don’t try and fix the child, fix the world they live in……it will all be ok, just dish out the love and it will all work out.”
“Don’t see the diagnosis as a punishment as I did at first See it as strength training for your character. You will discover that you can do and endure amazing things for the sake of your equally amazing child”
and finally even though there were many more “Don’t forget to laugh. Things will get tough and you’ll want to scream, shout and cry. But if you can stop smile and laugh about the little things it’ll help give you a different mindset to tackle it. Celebrate the achievements and be realistic about the weaknesses. Give yourself time to grieve and understand.”
As I said please feel free to add your own advice below.
Thanks in advance!