It’s Official. She’s on the Spectrum. Now What?

an open letter to the mum of a high functioning autistic child

There has been something going on with my eldest daughter Polly since she was a tiny baby. First it was reflux and eczema covering her face – related to reacting to dairy coming through my breast milk. Then came the multitude of food sensitivities which we discovered at two and a half.

A few months previous to that she stopped sleeping (both during the day and at night) and was waking up ten times plus. Even now she hardly ever sleeps through, and she is six next month. On top of all this she never outgrew the toddler meltdowns, and her violent outbursts have been steadily getting worse over the years.

Always something

Something has felt not quite right for a very long time, and I just knew there was more to this story than everyone else allowed me to think.

“She’ll grow out of the allergies, don’t worry”

“She’ll be so tired when she starts school that she’ll start sleeping all night, don’t worry”

“It’s all normal kids stuff, mine fight like cat and dog all the time, don’t worry”

The well intentioned, yet largely unsolicited advice, has been of little comfort to me over the years.

welcome to the Polly showI’m kooky when it comes to my gut instincts, but they very rarely let me down. Last summer P had a whole bunch of gastro tests done, to investigate whether there was something medical going on, but every single one came back negative. It was a huge relief, I had major stomach surgery at 5yo and would do anything for my own kids to not have to go through the same. It left us not really knowing where to turn next though. So on we plodded with the best parenting we were capable of on no sleep, and a diet so wholesome that her teachers regularly comment on how envious they are of her lunch.

Last September I wrote this over on my GAPS blog.

“I’m going to set the cat among the pigeons here. What if her problems aren’t being caused by standard allergic reactions to food, but by a toxic overload and leaky gut syndrome? What if the super clean diet of cooked from scratch organic goodness she has been eating all her life is the only thing saving her from an ASD diagnosis? It’s no secret that ASD and food sensitivities go hand in hand. I’m starting to think that my hubby and I have been tearing ourselves into pieces looking in all the wrong places.”

Christmas saw my family in absolute dire straights. Hubby and I then went on a mission to try and turn it all around, and totally eradicate our own negative behaviour. Which trust me was bloody hard, but we didn’t so much as raise a voice over the two week holiday. We saw improvements but it didn’t work the miracles we were hoping it would. By Easter her sleep had gone to pot again, and her violent outbursts were getting more frequent and intense. To the point where we couldn’t trust her to be alone with her baby brother in case she hurt him. I conceded that what we were doing wasn’t enough and that perhaps my theory about autism wasn’t so whacky after all. Then I read this post by fellow blogger Reprobate Mum and alarm bells started well and truly ringing.

Our biggest red flags
– lack of empathy
– inability to read body language or communicate non-verbally
– toddler like temper tantrums
– obsessive about her likes
– has to be in control
– incredibly poor sleep

wpid-img_20150509_103810.jpgGetting the help we desperately needed

We are lucky to have private medical insurance through work, and jumped the queue massively to see a top specialist at The Portland Hospital two months ago. Dr. K assessed Polly and asked me a million questions, all the time being privy to her full range of emotions. Dr. K told me it would be high functioning, but there was definitely something needing to be investigated. I booked a follow up (again lucky enough to queue jump) and in the mean time had to complete more questionnaires, as did P’s school and our GP. We had the appointment yesterday and went through what the sheets said, and were asked even more questions. Dr. K also got to see the way P interacts with her little brother (little sister was left with the Grandparents).

To be completely honest I think Dr. K had made up her mind about Polly last time, she is a leading expert in autism and sleep disorders after all. The questionnaires seem to be just a formality. We were asked whether we wanted to contest her diagnosis of High Functioning ASD, and see another doctor to have an independent assessment done, but we declined. She was just confirming what we had already come to terms with. Now we have a diagnosis on its way, we can start to access the support our family so desperately needs.

It’s Official. She’s on the Spectrum. Now What?

Why am I writing this and telling the world that my kid is autistic? Quite simply because there is no shame in having a child on the autistic spectrum. P’s condition hasn’t been caused by anything that anyone has done, or could have done differently. There will be no guilt, and there will be no apologising. This is the way she was born and what my husband and I now need to do is start equipping her and the rest of the family with the tools we all need to live a happier life.

Attitudes will only change once people start talking about this stuff out in the open.

I keep hearing the term early intervention over and again, and because she isn’t even six yet I am very hopeful that we will be able to get ourselves to a much happier place fairly quickly. Hubby and I will be tapping into the support networks and parenting groups that will help us do this. You can learn more through the National Autistic Society.

A plea to trust your gut

I’ve also written this as a little plea to parents to trust their gut instincts when it comes to your kids. If you know something is up then fight for an answer, and do not allow yourself to be rail roaded into thinking that everything is fine, when you know in your heart of hearts that it’s not.

Digiprove sealThis content has been Digiproved © 2015-2017

77 thoughts on “It’s Official. She’s on the Spectrum. Now What?

  1. Firstly – YES always trust you kooky gut – I too have one of those!
    Secondly – YES, there is absolutely no shame having an autistic child. Once someone even said to me, it’s a shame there is no cure – needless to say I gave them a tongue lashing.
    I bet having the private medical insurance was a real relief. My mum battled for years to get my brother diagnosed . She was marked down as a neurotic first time mum. Thank you for sharing this, it’s such an important message to deliver. Autism is nothing to be ashamed of. xx

  2. An amazingly powerful post, lovely lady. I am so glad you listened to your gut reaction and had Polly seen. Hopefully now you can get the support you need. Much love gorgeous. You are an amazing mummy and this post just reinforces that fact. Hugs Mrs H xxxx

  3. Great post. So honest and as mothers we know! I would be like you and want to find out and work out what to do! Some people hide away but so best to face it and deal with it!!! Best of luck xxx

  4. I hope having the diagnosis will be a turning point for her (and you) and that you will get all the support you need.
    My friend’s son was diagnosed at age 5 and is doing great. Addressing it early seems to be key.


  5. Thanks hon. It’s certainly been a journey, and now we know what we’re up against we can parent P the way she needs. This combined with accessing support services will make all the difference for us xx

  6. I am glad you have more answers and support now and it’s easier moving forward on how to deal with it and what to do the tools you need. It’s always important to follow your gut even to just double check. Thanks for linking up to Share With Me #sharewithme

  7. Mummy’s instinct is so important, we know our kiddies. Glad you finally have a diagnosis, hopefully now you will be able to access the support that you need xx

  8. You have written this so well, and I think it is great that you are sharing your story in hopes that it could help someone else. You have been through so much, and I am glad you can now get the help you want. I hope things can improve for you all now. You’re clearly an amazing mother. Big hugs xx #myfavouritepost

  9. Ah, Reneé, trusting our instincts is so important isn’t it? I’m so glad that you’ve managed to get a diagnosis so quickly, now you can start to access the support that you all need. Sorry for taking so long to comment, I read this post when you published it, it’s just been rather a busy week…! Can’t wait to see you tomorrow x

  10. Glad you trusted your instincts and hope that having a diagnosis will help you to move forward and get the support to help you all as a family x

  11. Knowledge is power they always say and its so true! Understanding and empowering yourselves with how to help Polly will be great for all of you.
    Totally agreed on trusting your instincts, sometimes we push our worries to one side…but we know.

    All the best on your new journey x

  12. Great post, I believe so much in mother’s instinct! At least now you have a diagnosis and you have support networks. Good luck with the future #myfavouritepost

  13. This a brilliant post and beautifully written. The most poignant for me is that you trusted your gut instinct and didn’t give up for the love of your child. I totally believe that we (parents) know our children better than anyone else and we are instinctively in tune with them and we should go with our instinct. I’m pleased you now have a diagnoses which should at least allow you to move forward to develop workable strategies for you & Polly

  14. I think it is so good that you are sharing this because as you say, it needs to be talked about and to there in the open. I really hope that you can get some support quickly and it makes a difference, I will keep an eye on how you get on! My son is six and also I have wondered about him as he is ‘a bit different’. He just has always needed that bit extra. It is such a worry and sometimes I feel I just need a bit more support to be able to understand him but it hasn’t happened. It might just be our family situ and his dad’s illness that is affecting him though, who knows. Thanks for sharing your experience though and good luck! #sharewithme

  15. I used to work for the National Autistic Society and met parents time and time again who had the same gut feeling you describe.
    Your attitude is great. Early intervention does often have really positive effects. At the very least everyone will understand why your daughter is ‘different’ and be able to respond in an appropriate way.
    Hugs to you and your gorgeous wee one, everything is going to be OK xxx

  16. Post like these are so so helpful to others especially if they are in the same boat, or even if they find its their niece/ nephew that has it. So glad you’ve got it confirmed and it sounds like you have a good plan ahead. You are an awesome mummy and your little girl sounds just as awesomex

  17. although you suspected, I think getting a diagnosis help Put things in perspective for you. Like you said, you all can now build a live With the support available. Couldn’t have been easy but well done for sharing. Your post may help someone in the same position.

  18. Hun, I am thinking about you so much. Now you have an official diagnosis, it is all ‘real’ (not that it wasn’t before) and steps can be taken to help P and understand how she functions even better. The fact she’s had a clean diet all her life helped a lot I’m sure (I do remember that post!) and your active parenting always amazes me. Despite crippling sleep deprivation, work, challenging behaviour and cooking everything from scratch, you are always looking for ways to ensure your three little ones grow up in a calm, enjoyable environment. xxx

  19. What a very moving post and interesting too. You’re right to share your experiences as blogging reaches so many people – who may be feeling how you were before the diagnosis. Good luck for the future, but now you have some support hopefully she will flourish xx Thanks for sharing with #SundayStars

  20. Ah I’m so glad you have a diagnosis now – however hard it might be in some ways I really believe that there’s not much worse than knowing something in your gut and not being able to confirm that it is true. It sounds like you have already begun to access some fantastic support, and I’m sure there is so much more out there that you will discover. As you say Polly is still so young that I’m sure you will all be able to develop strategies that make life easier to cope with – and make the most of her uniqueness too! Autism is most definitely not something to be ashamed of, and I have no doubt you will continue to do the best by your girl as you learn and grow together xxx

  21. I am glad to hear that you are on a path now to getting your daughter and yourselves the support she needs. Trusting your gut instinct is so important. If I hadn’t have followed mine and trusted in the doctors repeated placations, my son would still be in a bad way.
    These times are not easy though. Thinking of you. #myfavouritepost

  22. In one way, having an answer must be a relief. But now the hard work of navigating the care system and getting Polly the support she needs begins!

    I know you said it in your post, but I’m going to say it to you too …

    There is nothing you could have done or not done that would have changed this. You are both amazing parents and the best parents these two little people could have. So there.

  23. It must be such a relief to finally get a diagnosis, and know that your instincts were right. I agree, its so important to follow your gut instincts!
    Hopefully now you’ll get all the help and support you need!!

  24. I think it is a huge relief finally knowing what exactly is wrong if you had to wonder for a long time, no matter what it is. Wishing you and your family all the best in your journey.

    Thanks for linking up to All About You & have a great week!

    Alex – Funky Jungle

  25. I’m sorry to read this but I kind of feel that you are glad in a way to have some answers if that makes sense? It must have been so frustrating not knowing and having lots of gut feelings. I’m also pleased to read you are not blaming yourselves as it sounds from this (and other posts) you have done so much to tackle things and do the best for your lovely daughter. I hope with a bit of help and support things may improve and you can get on knowing you have a bit more control 🙂 good luck !! xx #sundaystars

  26. I’m so glad to hear you have a diagnosis at last and that you trusted your gut to pursue for answers. Hopefully now you can get the help and support for Polly and yourselves. xxx

  27. What an incredible post. I remember reading the one you wrote when you made the decision to try and seek a diagnosis. I’m so pleased you’ve been able to find the answers you were looking for, in order to make positive steps forward. It was a very brave decision.

  28. You have an amazing gut (!!?) and amazing strength. You will get through this…and I’m guessing in a way it is nice to have what you thought was the problem confirmed. You are an inspiration to us all how you deal with these things. I can’t wait to chat on Friday! Sending you hugs and you know where I am if you want a chat before then xxx

  29. I’m glad that you have had a diagnosis, it doesn’t give you all of the answers straight away but it will help you all in the long run. I am pretty sure that my son is on the spectrum but so far we are managing his behaviour and his ‘quirks’ so I don’t know if we will ever go down the diagnosis route, but reading this post certainly makes me think that he is.

  30. Oh hun, I’m so pleased you got your diagnosis. I think you’re right, as parents we know when something is wrong with our children and being told by so-called ‘experts’ that everything is okay can’t help matters. I hope things get better for you soon now that you have the answers you were looking for. Good luck. xxx

  31. Ah hon I’m glad you’ve got the diagnosis as now you can get the help and support both you and she will need over the years. Like you say, there is no shame in the diagnosis and it is much better to know it and start moving forward than the alternative. So great you have private medical insurance too and were able to get a diagnosis so quickly! Xx

  32. The day we got S’ diagnosis was one of relief and fear. Relief that his behaviour had an explanation and fear of what the future would hold…
    He really is a different boy to the one we took to the hospital.
    You should now get the support that she needs but be prepared to fight for it as not everybody is as lucky as we’ve been.
    The lack of empathy thing? S used to slap my face and laugh as he was doing it but that’s changed…OK, he kicked OH up the arse yesterday but that was because his beloved Lego was in danger of being confiscated (OH is still learning the difference between meltdown and naughtiness and the little guy was overwhelmed)
    You were right to trust your instinct that something wasn’t right. For us mothers, I believe it’s apparent from the start.
    Loads of hugs and you know where to find me if you need any advice or just want to vent. Xxx

  33. I know it’s got to be mixed feelings on this diagnosis because on the one hand, it’s going to feel pretty challenging and on the other hand it must be a relief to have medically rubber stamped answers (even though your gut instinct already told you this) as you can now access all the support and advice that there is out there on exactly how to best deal with the behavioural problems you face on a daily basis. And yes, get these thoughts out in the world and lets treat autism the same as we would any other disability – with tolerance and compassion. Huge hugs Xx

  34. I can say I totally agree with you about trusting your gut – it’s sounds over the top but mummy really does know best in the majority of cases. I am glad that you have had a diagnosis for Polly now and hopefully you can quickly access the information and support that Polly and your whole family deserve. Thank you so much for sharing this.

  35. This must be an emotional time for you but it’s so great that you listened to your instinct. With you two as parents, Polly has always had fantastic support and hopefully this diagnosis will bring more of what she needs to make things easier and also a big chunk of support for you and Andy (and the rest of your family) too. Lots of love xxx

  36. Oh, my. What a thing to be going through, in one way, although in another way, not so much, because I guess you already *knew* in your heart.
    Early intervention is great. My ex-boss’s son was diagnosed with Asperger’s when he was 5 or 6, now he is 20 something, holding down a job fine. Likewise my friend Amanda described the way she drilled social skills into her son every evening, similar to the way someone might teach their child maths, to get him to a state where he could function at some level.
    You are both really fantastic parents. Wishing you all the best.

  37. It’s very interesting to read your post Renee and yet I admit to not knowing anything (not really) about autism. Yes, I hear it mentioned (quite regularly in fact) but I don’t know much about the conditions associated with it. So glad you can get the right support now x

  38. Oh hon I’m sorry I made you cry! I’ve been in the same boat though, crying whilst reading other people’s stories thinking ‘that’s us’. Only you know your boy and whether his behaviour is out of the ordinary though. If you do feel there’s something untoward going on, then follow your gut and get it checked out lovely. Sending hugs, I’m always here if you need a shoulder xxx

  39. Thanks so much Ting! It’s definitely been a roller coaster of a journey so far, and now we can start equipping her with the tools she needs. I don’t think it’s going to be easy, but I know it’ll be worth it and hopefully come Xmas this year all my family will be in a better place xxx

  40. Thanks so much Julie! I find it comforting to hear from an expert like yourself that diet and positive parenting are the best places to start. I firmly believe in both. I’m shocked at the amount of people who roll their eyes at the suggestion of trying to diet manage a condition like this. Once again I have to go with what my gut is saying.

    Glad your own gut never let you down, and it’s great to hear that your own daughter is a fine now and a mum herself xxxx

  41. Thanks so much for dropping by Catie, really pleased you enjoyed the post! We really should always trust our gut feelings when it comes to our kids 🙂

  42. Thanks Suzanne. We reached the point where we had to concede that what we were doing wasn’t enough. Now we know, we can do everything it takes to get her on track and the whole family living a happier life. I hope your daughter has improved now she’s a teenager, fingers crossed all round! x

  43. Thanks so much Vicki. Yesterday has left us with a mixed bag of emotions, but now we know what we’re up against we can start getting the family back on track xx

  44. Great post! My gut tells me that my son has a learning disability (and because of a chromosome abnormality I was informed this might be the case). I look forward to the day he can be assessed formally. I’m happy with any outcome but answers are so reassuring.

  45. I’m thankful you have had a diagnosis and can now help Polly, you are always right to trust your gut, it is the only way, thank you for writing this and I hope you find more answers and ways to support Polly now you know a little more, much love to all xx

  46. I am so glad you trusted your gut feeling and went along with having P assessed. I also like that you say there is no shame or guilt about the autism diagnosis. As a person with autism, I find the shame the hardest to overcome. I hope you will be able to help P becoem the best person she can be!

  47. Very interesting reading Renee and I’m so glad that you finally have a diagnosis. As you know, I’ve often thought that my middle one is somewhere on the spectrum – toddler tantrums, controlling behaviour, poor sleep patterns – but at 13, I’m now reluctant to do anything about it. Well done for pursuing it and getting an early diagnosis. I hope you get the help that you need. X

  48. I read this with a smile. Mothers instinct is always right. It is interesting the correlation between our stories. Good luck on your journey and well done for spreading the acceptance in such a positive way.

  49. It’s true, gut instinct never lies. I have my own battle of gut instinct at the moment with the boy. I’m not sure if it’s just sleep related or if there is more going on on a lower level :-/ I’m still reading even if I’m not commenting. You’ll be fine now you’ll have all the back up and resources available x

  50. Hi, what a powerful and positive post! With your attitude and ability to tackle things head on, your daughter will be fine and so will you. During my teaching career I taught over 10 children with varying degrees of autism/ADHD/Aspergers and believe me with the positive steps and diet awareness you have already put in place, you have given her the best start. I knew, in my gut, as you did that one of my daughters had something underlying for a long time. Eventually I got her seen shed 8 and she has Dyspraxia. Has never had much help but she is now a grown woman and mum herself. I totally agree with gut feeling!!!! Always follow it, ignore it at your own peril! Good luck, but I am sure you will be just fine. Now you know what you are dealing with there is so much advice and practical solutions that will reap huge changes and benefits. Xxxxxx

  51. Wow. Well done for pursuing, and trusting your instincts. It can feel a shock and relief when you finally get diagnosis. It will help any one managing her in the future and ensure she is not labelled naughty. However was thinking about our meeting on Friday and understand how wring out you have been feeling. You sounded much as I felt several years ago. I found ruthless positive reinforcement to be really effective and now, several years on, you’d struggle (most of the time) to see anything amiss with my son. But it takes the patience of a saint to ignore (blank) bad behaviour and occasionally it’s not gonna hurt to shout either.

    Did the doctor say where she is in the spectrum? Moderate or severe? Girls engage in masking so can be more socially adept than boys but often feel exhausted (and struggle more in their teens). My son was very specifically placed as moderately Asperger’s which was still being used as a label back then. I also think my daughter now six is beginning to exhibit traits, but not sure if going to try for a diagnosis, as she’s not actually hard to manage.

    The other thing to remember is social skills are sometimes quite delayed, a lot of very bright people have ASD traits and her behaviour will get easier to manage (I promise). But it helps you get the right tools in place to deal with it. In the meantime, it’s important to look after your self (be selfish) and try not to obsess (I know I was obsessed with Jonah and his behaviour for years because I felt so judged and as if I was on a crusade to help him).

    But they have to fight their own battles (and they can, especially with the help of an ASD diagnosis shield)

    Good luck and see you soon. Give me a shout if you need to chat anytime 🙂 x

  52. I’ve followed your journey through every post and I’m glad that your gut instinct turned out to be right. It’s been such a long and difficult journey for you guys but it must feel like a relief now that you can move forward and look to a brighter future. I’m glad there is also a support network that you can lean on. You’re absolutely right there should be no guilt or apologising as any parent with a child on the spectrum would feel. xxxx

  53. Very very true. I think it’s easy to be blinded by what Google says or what someone else who had a child who did this or that says. We are so reluctant to listen to our gut but when it comes to the kids I do. I will go back and back until I am happy
    I’m glad you have a diagnosis and that you all know it so can move forward in the best way for you all xx

  54. Hi Renee, your post has had me in tears and the reason being is that I have had the same worries about my little boy. I hope you and Polly get the support and help you deserve and that now you have a diagnosis things will be much brighter in the future. I will follow your journey with earnest. Julie xxx

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

All original content on these pages is fingerprinted and certified by Digiprove
%d bloggers like this: