How to accept an autism diagnosis
This title is perhaps a little misleading as no one can tell you how to accept an autism diagnosis when you receive one for your child, but I am writing this as recently I have seen people on social media doing just that; trying to tell a parent how to accept an autism diagnosis for their child and there simply can’t be any right or wrongs here.
So I am writing to explain my experience with our daughter’s diagnosis and the benefits that we have found through having that diagnosis, but if you are struggling with accepting an autism diagnosis then rest assured this isn’t about judging it is about parents of children with autism being supportive of one another because this road can be tough and this journey can be bumpy to say the least.
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Receiving an autism diagnosis is not a surprise
Our experience of our daughter’s autism diagnosis actually began way before we ever got to the test and this is something that may be familiar to you. I think for many parents of a child with autism it isn’t a surprise when someone mentions this. Typically parents are in fact aware before the health professionals in my experience and are actually the ones requesting assessment. I know that this is not always the case and some children are so efficient at masking that it is only crisis and overload that enables diagnosis. Often times though we know something is different even if we don’t have an official diagnosis.
I suspect if you are reading this article you either suspect autism or already have a diagnosis. For us we knew from the time she was around 18 months old that something was afoot with her development. She is a twin and her development milestones, whilst always ultimately achieved, were reached slightly behind the curve. Our concerns increased when her speech development was lacking, sadly our concerns were dismissed by health care assistants and GPs and so we ended up paying privately for speech therapy for many years.
You can read more about the details of the journey to diagnosis here The start of being a special needs mom and what you will see from that is that it was a long road to autism diagnosis that was paved with many tears and just the most frustration ever at not being able to get the help and support we knew our daughter needed despite a super supportive school and our determination to battle for her. Since writing that piece we have had the official ASD diagnosis for her and that is where we are right now. The diagnosis was not a surprise, but after many years of being told that she just had a speech delay the first mention of ASD was a shock.
Parents reaction to autism diagnosis
If you are in a position where you feel sadness or feel like you are grieving your child’s autism diagnosis please don’t let anyone make you feel bad about that. I have recently seen that Greg Wallace described the time after his son was diagnosed as being “a period of almost like mourning” and I have seen countless people (both those with and without autistic children) disparaging him for his statements. I think that is awful and he should be able to be honest about how he felt as he most certainly won’t be alone in feeling like that. At no point did he say he didn’t love his son or loved him any less because of his diagnosis he simply was honest about how diagnosis made him feel and he essentially grieved a life that he had planned out for his son.
Whilst I did not have this period and didn’t feel that way I certainly had a day of sadness when the term ASD was first mentioned in association with my daughter. This was in fact way before she was actually diagnosed so when that piece of paper was issued I already knew that she was autistic and it was ultimately just a confirmation that enabled her to receive additional support.
I did not feel sad when she was diagnosed and did not grieve her diagnosis, but have I cried about it – yes! Many times! I have cried not because she is autistic as with or without a diagnosis she would still need additional support, she would still find some things harder than other children and would still be her beyond cute, lovely self. No I haven’t cried because of her diagnosis, but I have cried because she has suffered. She has found things harder, she had a period of really struggling at school and scratching her face until it bled due to anxiety. That certainly made me cry. I have also wept for her future self who may find navigating this neuro typical world harder. No one wants to see their child struggle, no one wants to see their child experience difficulty and pain so, I think, it is natural to be worried about this and to find it at the very least daunting.
My advice to you as a parent that has been through the diagnosis process is to be gentle with yourself. If you feel sad or scared for your child’s future allow yourself to feel that way, but then also remember that it is your job to advocate for them when they are small and you will need to in order to get them the support that they need. This is a battle and it isn’t one that is always won easily. I have been so lucky so far in that I have been able to secure a diagnosis, an EHCP and funding for my daughter in the past 18 months or so and it has transformed her life, but even with a supportive school I have had to fight for her and that is something that your child will need you to put energy into so we all have our moments where we wish that things were easier for our child or that they didn’t have to struggle, but we must also get our armour on and get out there to get them what they deserve.
My child was diagnosed with autism now what?
This would kind of sum up how I felt when my daughter was diagnosed with autism. I was expecting some kind of help, advice or at least information to be forth coming and there was basically nothing. Sure I got added to a carers list and the diagnosing consultant advised me to apply for DLA for my daughter, but that was it… I was told I would be invited to a parents forum, but that never happened and to be honest by then I had started doing my own research and was well into the battle for the EHCP so I was more focused on that.
My daughter’s diagnosis was almost a bit of an anti climax; I don’t know what I was expecting – nothing really…. but I expected to feel more when it arrived and actually all I really felt was relief. Relief that she had that ‘label’ to enable us to access more support options for her and relief that at least that battle was complete. I also felt relieved that I could finally say my daughter is autistic. I felt very strongly that it would benefit my daughter for her, the children around her and their parents to know that she has ASD so that they could understand some of her behaviours and be more flexible and understanding.
We told my daughter and her siblings that she is autistic very quickly and just presented it as a fact ‘ no biggie’. We wanted them all to know why their sister sometimes needed additional help and wanted her to know that she just thinks differently (not worse, not better) and that this means she may need someone to help her sometimes manage the neuro typical world.
After that the next step was applying for the children’s disability allowance which was quite the mission, but ultimately worth it as it will allow us to fund some additional therapies and activities that will be of huge benefit to her well being and ongoing development.
The positives of an autism diagnosis
I said at the beginning that this article would highlight some of the benefits that we have found since having an autism diagnosis for our child so here goes:
- Her diagnosis has allowed us, as her parents, to focus in on what we need to learn about to best support her
- Our daughter has a reason that she finds some things harder than others so she is able to continue to see and develop her own self worth knowing that she isn’t ‘incapable’ or ‘stupid’ or any other negative things she could think about herself. She knows she is autistic and that this isn’t a bad thing
- We get to understand our daughter more and that is wonderful for any parent
- We have been able to apply for things like an access card which enable our daughter to have reduced queueing times etc… which means that we are actually able to go out as a family without causing her huge distress
- I am now recognised as her carer and so have the carers centre checking in on me and how I am coping. I have been been offered a massage appointment which is amazing. Even just being acknowledged as a carer has made me feel validated and given me more strength to fight
- Having a diagnosis of autism has facilitated the battle for educational support. There is no magic wand, but certainly having that autism diagnosis has hugely supported our case for additional support within school and having that support in place has truly transformed her life. She is happier, calmer and able to actually access learning so has begun to make academic progress and so her self esteem is growing and on it goes.
- We have also been able to explain more easily to her siblings why she sometimes does get more practical help from us and why we have to make allowances for her and be more understanding.
- As our daughter grows her understanding of her own diagnosis will enable us to teach her to self advocate
- You can be part of the change that is happening for those who are neuro divergent. There is more and more acceptance and more and more push for society to be less fixed in its approach so that both neuro typical and neuro divergent people can be happy and comfortable in our world and as a parent of a child with autism I want to be part of that change. Knowing that my daughter is autistic has connected to others campaigning for change, it has allowed me to lend my voice and has caused me to spend more time making sure my children and those around them understand that different is just different – it isn’t worse and that we all need to bend for one another it isn’t just up to those who are autistic to bend for us.
I think a parents reaction to autism diagnosis is hugely personal and some people will find it upsetting to even think about such a diagnosis and I would never judge another parent for deciding against assessment or being devastated by a diagnosis. I would though just ask you to think about who your child is and how adorable they are. That doesn’t change no matter what a diagnosis says. It won’t change how much you love them or how much extra care they need. They needed that with or without the diagnosis. It may just help you to get the support that you and they needed.
If there is one thing I could tell parents who suspect autism or know that there is some additional need, but are perhaps scared to find out, then I would say do it, find out as that can be the key for understanding your child and can be so helpful in supporting them to achieve their potential. It can be daunting, it can be hard, but hiding our heads in the sand doesn’t change anything does it?
So if you are working on how to accept an autism diagnosis I hope that these positives will help you and if you are struggling with a decision of whether to even have an assessment then I hope this is useful. One of the things that really helped me navigate the whole post diagnosis and applying for support process was having friends who had already been through this so if you are at the start of this journey and would like any advice then please do head to my instagram and you can message me to ask any questions you would like. VISIT NAVIGATING BABY ON INSTA