To the parent that just found out their child is on the spectrum, it isn't your fault and it's nothing you have done.
Believe me I know how heartbreaking it is to find out your little bundle of joy isn't "progressing" or "meeting their milestones" like everyone else's child. Furthermore, not understanding how this could happen because "my child doesn't look Autistic". The reality is that Autism DOES NOT have a face, it's different in every single person, and unfortunately is an invisible disability.
You can't stop feeling like you've done something wrong, and laying awake at night worrying about your childs' future, what will happen to them, how will they function, will they be treated differently, along with a million other stresses. You'll then have to try to wrap your head around the large piles of information your therapists give you to read, the books they recommend, all the online research you'll do that will and won't help you, and the families members / friends who insist on telling you about their long time friends sister who had a daughter that didn't speak until she was 10 "so he/she will be fine, don't worry".
Unfortunately, this will happen more than you think... Believe me at times it's infuriating as no child that is on the spectrum is the same, and therefore the symptoms/ characteristics of Autism can be so different in every child. Unless a professional, generally people don't know what they are talking about, but rest assured their intentions are good and they are just trying to help or make you feel better.
The road from here is going to be a very long one, and one that is full of therapy appointments, loads of researching, reading and feeling like there's far too much information to retain, more therapy appointments, stressful days, sleepless nights, meltdowns and lots of tears and frustration (from both you and your child). BUT, you'll also learn how to connect with your child in a new way, and see the world from a new perspective, whether they are verbal or non-verbal, you'll learn to slow down and appreciate the "little things" like a small eye contact, your child dressing them self, pouring their own cup of milk, saying their first worlds or even sentence, being able to help calm them down when they're too over-stimulated or most importantly knowing how to handle a meltdown.
This will more than likely be the most challenging thing that you've faced as a parent, or in life, and unfortunately doctors and therapists can NOT "fix" this, what they can do however, is help to teach you and your child strategies and ways to cope better in every day life, this will be hard work but so rewarding. I can promise you one thing, if you do show them unconditional love, put the hard work in, commit your time and energy, you will see results, whether they are big or small, you'll learn that any amount of progress is such a big victory and working as a team with your child to focus on moving forward and progressing no matter how fast or slow it may be, this will bring you closer.
When M was first diagnosed with Autism I too was like you, I felt so disconnected from my own child, I had all the typical fears and worries of how I was going to support him, and connect with him (and i still do). All of this coupled with the fact that I didn't know the slightest thing about Autism, and had a son that was only saying one or two words at 3.
Where do you go from here?
As hard as it is being an ASD Parent, it has taught me to appreciate so much in my child, and obtain a whole new meaning of unconditional love for him. I wouldn't change him for the world. This is the hardest I've ever worked in my life, it's a full time job and I'm constantly burnt out, tired and stressed and never putting myself first... BUT, I know that if i put in the hard work now and do whatever I can, my son will have a better chance in life and his progress will be my greatest achievement.
We are lucky enough to work with two really great therapists, our Occupational Therapist and Speech Therapist, that both meet with M at School for one on one visits, and also meet with me at home alternating week by week. Their approach is about teaching and working with the parents to become the therapist, and offering advice and strategies to help support the child as the parents are the ones with them 24 hours a day, 7 days a week in their own home. I can not recommend this type of therapy enough, we have in the past had clinic visits where I wasn't involved, it was an hour long once a fortnight, I'd have to sit in the waiting room while M "played" with an OT and then was sent home not knowing what to do with my child etc. There are a lot of great therapists out there and it's about finding the right one for your childs' needs.
It's taken me 3 years since M was diagnosed, to feel confident in knowing that I'm doing my best, and trying my absolute hardest to support him in every day life. Some days are a lot harder than others, but I've seen such incredible progress in my son because of our hard work. 3 years ago he wasn't able to tell me what he wanted, or what was wrong and it caused a lot of tears and frustration from both of us, but with the use of visuals and non stop trying he is now able to say sentences, request things that he wants and SOMETIMES, if I'm lucky call me Mum.
While we still have a very long road ahead, I can see how much our hard work is worth it, and if anything this has opened up my eyes to seeing what's most important in life, this has also brought me closer to my son. I cannot stress enough how important it is to celebrate the small victories and not think too far ahead. One step at a time is all you really need to focus on.
Our OT alway tells me to "pick your battles", don't try and focus on all your goals at once, write them down and tackle them on days where you can handle the work load. Its not worth trying to focus on speech, toilet training, sitting at the dinner table for just one meal, working on functional play, communicating, or the long list of other things you'd hope to work on with your child.
Furthermore, its hard to remember to do all these things when you're also running on empty. Remember to be kind to yourself, you're doing the best you can, and believe that you'll both get through this if you are patient and remember to breathe.
You don't need to change you're entire day, its easier to "tweak" your routine so you're able to incorporate the strategies your therapists recommend and teach you.
Don't ever be ashamed or embarrassed of your child's diagnosis, and do not feel as though you need to justify your child's existence to anyone. We live in such a better era compared to 30 years ago when people weren't educated enough about Autism to acknowledge it as being a disability. We are lucky that people now have a far better understanding, and you will discover that the more you talk about it, the more educated and aware people will become. I know you don't want your child being treated differently as much as i don't, but the people around us need to know how to adapt their behaviour and communicating style in order for our children to understand and survive in the 'real world'.
I wish i could say it gets easier, (well in my experience at least) it wont but eventually you will feel more confident and be able to look back in a few years time and see how far you have come, and what you've learnt, how to cope and what works best for you and your child. Reflection is such an important tool for self gratification.
Remember, not every child on the spectrum is the same, they all progress differently, what works for someone else's child might not necessarily work for yours but keep trying and don't give up, EVER... Even if its the smallest thing like trying to engage in your child's play, keep trying.
Despite what some think, just because your child is non-verbal it doesn't mean they like being alone. Spend time engaging with them and seeing the world through their eyes. Its not about getting them out of their little world and into ours, or the "norm", its about learning how to be apart of their world and adapting ourselves to communicate in their way so they better understand.
I know how hard it is being the parent, but always keep in mind that its harder for the child not being able to communicate their needs then it is you trying to understand them.
I appreciate you taking the time to read this and I wish you all the best on your journey.
- From Mother of Mayhem.
This blog post was originally written for Sarah’s personal blog Raising Mayhem and you can read this one and many more at www.raisingmayhem.net