Life and other catastrophes · Parenthood · Psychology and mental health

“My son has been diagnosed with Autism.”

“My son has been diagnosed with Autism.”

Person A shifts her feet nervously from side to side and smiles weakly before saying: “So how is your other son going? Has he had a good week?…”

Person B says,” Um, sorry – but what is Autism exactly?”

Person C says, “Ohhh…. that’s hard. I have a cousin whose son has Asbergers. Yeah. It’s not easy.”

Person D says, “What’s his gift? I usually find that kids with Autism are usually gifted at something even though they struggle socially. You never know, he might surprise you and turn out to be a genius and make lots of money one day! Haha…”

Person E says, “Oh, hat’s off to you. God must’ve known you could handle it and that you were just the right person for the job.”

Person F says nothing, but looks at me with the most compassionate eyes I’ve ever seen, and asks if she can give me a hug.

“I won’t knock back a hug,” I smile wearily.

And she just holds me…

Our son was diagnosed with high-functioning Autism in May 2014.

After years of asking why on earth he was so violent and defiant, and consulting numerous professionals for help with his behaviour, the news was a relief – but shattering.

All we wanted to do after drying our tears was give him a hug that said: “Now we understand why, matey…”

Not that he would’ve necessarily picked up on the subtle meaning behind that hug, or even accepted a hug in the first place.

Affection between my son and I consists of a stolen kiss on the cheek while he’s sleeping, and occasionally a brief embrace before bed. He rarely initiates physical contact.

How do I describe life with Jonathan?

Let’s just say it can be very intense for a quiet, sensitive introvert like myself.

To put it in simple, factual terms, he’s visited three different paediatricians, seen six psychologists, numerous school counsellors, dieticians, naturopaths – and performed two IQ tests to test for giftedness, just in case. He’s been grilled, questioned, spent more time in the principal’s office than the principal, and had more support teachers shadow him in the playground than the ghosts at Halloween.

He’s been well looked after.

Never did we imagine when we started our parenting adventure that this was the life mapped out for us. But who does?

Who expects any brand of hardship, whether it’s a failed marriage, or the death of an infant, or a life of chronic, unrelenting illness? Who plans on tough journeys and rocky roads (apart from the chocolate variety).

And I’ve had my share of chocolate in the last nine years of his life – or at least since the time his behaviour could no longer be explained away as ‘the terrible twos’.

Yes, my son has numerous meltdowns, anxiety attacks and aggressive, violent outbursts in the space of a week. He particularly enjoys throwing shoes at us and his brother. He goes in phases where he’s always on edge, ready to explode. He can’t put himself in other people’s shoes – understanding any point of view but his own is a big ask. He has a small soft toy he thinks is human and struggles to go anywhere without it. We can only expose him to social situations in small doses due to his anxiety. If he’s anywhere uncomfortable for too long he enters meltdown mode and we have no choice but to leave – and now he’s too big to carry out the door.

Often our family is divided in half, with my husband and I looking after one son each due to the boys’ fighting.

We’re currently working with psychologist number six to manage his mood swings.

But Jonathan’s emotions and reactions are not the only thing about him.

At the same time he can be deeply philosophical and curious.

He aced his Grade 3 NAPLAN test.

He laughs uproariously at a YouTube channel he loves.

He writes his own illustrated activity books and gets us to test them out.

He wants to be an author when he grows up.

He’s the most gifted young voice actor and singer I’ve ever seen.

And sometimes he prays, sings, and tells stories to God till 10pm.

My son has been diagnosed with Autism…

This simple statement doesn’t capture the tears shed for the son we assumed would be ‘straightforward’ in his development. The son we simply wanted to love, and love some more.

The son we do love, and love some more.

The son who’s broken our hearts and baffled us… but not defeated us, nor our marriage (which is a miracle since so many couples with an Autistic child end up divorced).

For our son we keep getting up every morning because that is what you do. And you’re not a ‘hero’ for doing it, nor a saint.

You’re just an ordinary person who God chose to have a child with Autism, and all that the experience entails.

I used to believe hardship and tough circumstances grew us.

But I’m not sure how true that is. Often, I just feel tired.

I envy the simplicity of families with ‘typical’ children. Yes, I know there’s no such thing as normal – but raising a special needs child can make me feel isolated. Sometimes I feel envious when I hear that my friend’s biggest struggle was that her child didn’t eat dinner. As much as that’s hard too, it’s difficult for me to get perspective sometimes.

And on occasion, when it’s been a particularly volatile week, all a person has to do is ask ‘how are you’ and I fall in an emotional heap and start venting and crying.

I am no different to any other parent who wants the best for their children.

Only the goal posts look slightly different.

That’s the thing. Hardships cause you to realign your expectations.

Not that you give up praying for healing and better outcomes and all that.

But you learn not to set your sights too high for fear of the next fall down-hill.

And like anything, you step it out. One baby step at a time. Sometimes crawling, sometimes running, and sometimes dragging your feet.

As long as you just keep walking.

And you never know – around the corner there might be someone waiting with a hug that makes everything OK, just for a moment.

And you round another bend just that little bit brighter, more purposeful, and full of hope…

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39 thoughts on ““My son has been diagnosed with Autism.”

  1. It is hard… And it is totally OK to cry… And we can wonder why – but also know that God has a plan. A plan that we may never be fully aware of this side of heaven. But He doesn’t allow anything that He can’t handle. So with Him by your side you will make it – one step at a time!

    Will add you to my prayer list.

    Love,

    Betsy

  2. Hello dear,
    I might not close with you, dear.. But I really touched read your this evening. I strongly agree with sister in Betty with her comment above, God has a plan for your son also for you. It’s so hard but God will not leave you alone, He will always be with you 🙂 Be strong and please believe that everything will going well with the Lord 🙂 will do same thing as Sister Beth did, we here far from you will pray for you and your son. God bless you 🙂

      1. You are welcome, sister in Christ, Ali. Glad and be grateful to know you. I do believe as a young mother I could learn so much valuable things from you 🙂 God bless you too.

  3. How brave you are, to share all of your deepest feelings so openly. I pray that your days will see victories, no matter how small and that God will give you each and every day, just what you need to get to the next one…and hugs, lots of hugs. {{{HERE IS A CYBER HUG}}}

  4. This was a beautiful post. I can’t imagine how difficult daily life is because I haven’t experienced this particular struggle. What I can see in this post is that you love your son very much and are committed to doing your best. I pray that God gives you the strength and hope you need each day.

    1. Thank you Janna. Strength and hope are key, aren’t they? And God’s love is my only hope for giving him the best.
      Thinking of you and hope you’re holding up OK.
      Take care,
      Ali

    1. This is a beautiful post! Times when we are willing to be vulnerable and transparent such as you have been.
      This post will help countless people as they read and know that they are indeed “normal” in feeling all that they feel. I do not have this challenge, and feel so for those that do … It seems such a relentless journey. And while your beautiful sons will both have gifts and hidden gold which you will call out, it will not be without a price. A gentle quiet spirit and soul like yours would also find the chaos and noise challenging to say the least! I hope that there are many hugs on your journey … But I also hope and pray that there are some acts of people’s love for you … Practical and kind support.
      Blessings, God is Good!

      1. There’s such empathy and understanding in your words – thank you.
        Practical and kind support, and hugs – these indeed get us through 🙂

      2. I do feel for you. I would so love to pray for your son and family and will do so … and perhaps one day we will visit Sydney or you will visit Melbourne and I can give you a hug and pray for you all in person. Be kind to yourself! Xxx

  5. Oh my sweet friend. I am in tears reading this and my heart breaks for you and your family. BUT GOD…this diagnosis is not the end, just a new beginning, harder than you want, BUT GOD! Trust that He will someday use all your pain and experience to help others have an easier way with it. I am not trying to diminish how awful you must feel now or how hard this is for you, but having been through VERY difficult chapters in life, I KNOW that our God is faithful. Sending love and HUGS…And eating chocolate and thinking of you. 🙂 Praying…

    1. Thank you so much for your tears for me, and your kind, empathetic heart, Sheila.
      Thank you for spurring me on once again by reminding me of God’s bigger picture… and his faithfulness which will be revealed over the years.
      Indeed! Will think of you next time I break off some chocolate 🙂
      Much love,
      Ali

  6. Love you , dearest Ali, and wish I was close to hug you. Crying some too, just because. Just because I understand and relate to every word of this. Today I was told repeatedly to bring my girl to see my in laws, by one of my in laws. I love them, I would love to do this, but. . . They live 45 min. Away and I don’t know how she will do, how she will respond and I can’t control the environment or people where we will go. And so I pray with you to the One who knows all you and your son and your family are going through, all you face each day. And just so you know, my oldest daughter never bonded with the special needs sister. They are not close. It took her to move out and be away to just be able to tolerate her sister better. I am not trying to be a downer, but let you know that I am here nodding and saying God, please pour out your mercy and grace upon this precious family. Love you and God bless you!

    1. Thank you for understanding, Debbie, and for sharing in my pain and sorrow.
      Praying for you with the family struggles you’re facing. I know you ‘get it’.
      Thank you for reminding me of God’s grace and mercy, and praying with me.
      Much love,
      your sister Ali

  7. Hi Ali.
    Hardships are meant to make you see that it’s God who is control, who understands all and who is there and from reading your post it seems like you are in that place. God has entrusted you with his son and you have turned to Him for answers and not in your own ability. May God strengthen you as you continue to walk this difficult and challenging road, a road that He has prepared for you alone so He can reveal His glory! His grace is on you to walk this road and I believe you will see the fruit. You will be rewarded by God for staying the route and not giving up.

    You are not alone in this Ali:

    “And I will ask the Father, and He will give you another Comforter (Counselor, Helper, Intercessor, Advocate, Strengthener, and Standby), that He may remain with you forever-
    John 14:16, 17

    God bless you and your family Ali….!

    I have prayed for you and your family!

    1. Amen, Rolain. Thank you so much for your comforting and encouraging words… Yes, I keep looking towards God for answers at every turn – and his love never disappoints. So glad for his presence and guidance. May his glory be revealed on this journey…
      And thank you for the uplifting verses you sent. So glad we have a great Comforter who is with us always 🙂

  8. I’m sorry, Ali. As evidenced by friend A-F responses, it’s obvious none of us ever know the “right” thing to say. So many families are living this reality. Praying you find answers in your quest as a parent to do what is best for you and your son.

    1. It’s so hard to know what to say… But it’s always great when someone says they feel my pain and will pray for me. That’s the best response ever 🙂 Thank you so much Patti 🙂

  9. That must be extremely difficult for you and your whole family. I only know that God loves Jonathan, that he loves you, your husband, and your other son more than we can imagine. His plan? That remains to be seen. His love? His love is always present, perfect, protective, and powerful. Every day. I’ll pray for you to be able to rest in his love.

  10. Dear Ali, my heart goes out to you and your family. We never know why on this earth that we are “chosen” to walk the paths that we have to walk and endure the heartaches that we endure but we just know that God has a plan. It does not make it easier. But we just have to trust Him with our children and our entire lives. I hope that you are writing a daily journal of your struggles and your blessings as well as keeping all that your son writes. Both of your writings will be published one day to help others. I will be praying for you. May God pour out His blessings upon you and your entire family!!

  11. Thanks for sharing this. I have three children who aren’t diagnosed with autism, I find my job difficult and I spend every day asking God for help with my parenting. I have spent many nights crying due to difficult trials that arise with parenting. I couldn’t even fathom the struggles you feel everyday. I have great respect for parents that endure the grief of what isn’t and learn to embrace the beauty n disappointment of what is. I am sure what you have just written so well will speak to many.

    I am not sure about statements like, ‘God obviously thinks you can handle this’. Personally my struggles in life have simply taught me how little I can handle and how much I need God. I was reading 2 Cor 4:17 about us being earthen jars containing a heavenly God. I think there are a lot of trials and this earth where we have to admit the limit of our earthly jar and look to the one who created all and defeated the enemy. I pray that God will surround you with support, that you will find Him in a deep ever present way. I pray that you would see God’s hand move in the little things as well as the big immovable things. Blessings

    1. Thank you for your beautiful words and encouragement. Parenting us hard, full stop, isn’t it? We carry a great responsibility yet it’s so reassuring to realise that God carries our kids with us. We are not alone on the job.
      I agree – and have reached my own limits many times. But it’s amazing how God steps in during those times. And I’m slowly growing in patience with things I used to have no patience for.
      Thank you for your thoughts and prayers for us. Support does indeed come in many forms.

  12. Incredible post. . .

    Thank you so much for sharing . You and you your family are truly a blessing. I can’t imagine how difficult your days must be but know that God has you , God has your family, & what better place to be than in the hands of God. . .

    Praying for you !

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