Jay was non-verbal up until the age of five!
In the usual way, babies will babble and coo! They then move on to single sounds, then single words. At two years old we expect they can say two hundred words and will use Pivot speech-adding two words together. At three, they will begin to string sentences together.
People sometimes speak of language only in reference to what a child can say. However, a massive part of language development is understanding and listening and concentration. Processing words and sentences all follow, until a child can basically have a full conversation with anyone they wish to speak to.
In Classic Autism this just does not happen. Jay has “Classic” Autism and so his language was severely delayed. As a baby he did not babble and he did not develop words normally. Instead he would learn a word and then lose it and never say it again! He stopped speaking these words by two!
At three, Jay began to speak in the form of “Echolalia.” This refers to the meaningless repetition of phrases and words and sounds heard by other people in all forms including media. So, Jay began to say key phrases from stories I read him, and phrases we said as a family. He repeated words over and over in non-context. This means he did not understand their meaning and could not use them in a relevant and real way.
This is Echolalia! It is actually really fascinating when you hear it from your child, especially since Jay was only three when this began. I ask myself over and over why I did not at this stage seek help! All I can say is that with two other children, one who didn’t speak until three and attended Speech Therapy, I was just more relaxed. I convinced myself it would come and his language delay would eventually come right. My elder son’s delay did right itself you see , so I thought Jay’s would in time too!
One day when Jay was about four, a friend came to see me for a playdate. We always discussed Jay’s lack of speaking and his strange repeating of random phrases, and the friend said to me on this playdate something that was to have an impact much later on in our journey. She said, ” What if he never speaks?”
I was aware of the comment and the implication of it and I held no ill will to her for saying it, yet it went into my mind and stayed there. Until one day, when Jay was playing and repeating lines from the Julia Donaldson book ” The Snail on the Tail of the Whale,” I suddenly panicked and looked up “severe speech delay” online and there it was! The only two explanations for a severe language delay at four and a half, were Down’s Syndrome and Classic Autism!!
I think I really knew all along something was not right with Jay yet until this time and after the café comment I wrote about in my first post, I was seriously in denial!
After this point, I began to acknowledge and allow the fact that Jay probably had Autism, into my mind and once it was there to some respect I did accept it. What I was not prepared for were the feelings that came after diagnosis. Guilt racked my mind as I realised I should’ve acted sooner, that the signs were clearly there and I made excuses for them. I also felt an almost overwhelming emotion that felt a lot like grief. Not the kind when someone passes away , but a realisation that my life would never be the same and that the child I had given life to would never grow up. Physically he would, yet never mentally or emotionally. The language delay I saw in Jay was a serious warning that he had severe special needs yet if I had sought help at three , he would’ve been helped sooner. However, it was to take a further two years before I truly accepted it and made my peace with it, and ironically I even felt guilt for taking that long! It did not help that I am an Early Years Practitioner and should’ve seen the signs sooner and was even my setting’s Senco at one time! These days, I do not allow myself to feel this emotion as I assure you , it is a whole different ball game when it is your own child!
Since Jay turned four years old I have supported him with his language delay. He has words now however he does not understand everything. With a child who is non-verbal or has limited language, visual aids are a must. I began to buy PECS cards to add to my “Now and Next” board I bought for Jay. It clearly shows all elements of the day and these are placed on the board as and when they are happening as a clear sign that a transition will be happening. Here is a photo of our door which is covered in visual communication aids Jay can use if he cannot find the words or means to communicate with us by speech alone.
If someone reading this has just started on this journey, I really cannot stress more the importance of using these aids to support a child with a severe language delay and a child who is non-verbal. Over the last three years I have taught Jay how to use his area to communicate his needs to me. It can be how he is feeling, what he would like to do, or what is coming next. Not only does this system help them stay calm and focused, it also relieves anxiety. If the child is not shown the next transition or event in his day he may become anxious to the point of meltdown. If the child cannot say or identify a feeling without the emotion picture, them they would become more and more anxious until again it will lead to a meltdown. There is a comfort in these cards and for Jay they have averted many a meltdown from happening, where as before I began using these he would constantly go into frustrated meltdowns because he did not have the language to communicate the need with me or his Carers or Teachers. I encouraged Jay’s old school to use these. His Special School always have, but in mainstream you have to push. You have to educate them because no matter how nice or good the Teacher in mainstream is they will need more information from the parents in order to fully understand how to change the way that they communicate with the child. When speaking to a child like Jay on the low end of the spectrum its important to use two to three words only in a sentence, rather than saying a long sentence with multiple commands. So we might say ” Jay coat on” It sounds so strange but we have to do it. Even in front of people who look as if to say “why is she speaking in that blunt direct way? You can worry about “please” later!
Sentences have “key words” in them or “Information carrying words.” Basically all key words are, are choices. You are giving a choice. For example,” would you put the Blue train Under the bridge? ” Lets identify the ” key words” here. If we test the child by giving them a green, red and blue train we have asked them to “choose” the correct train-the command being the colour choice, in this case Blue. The child then has to decide where to put the train from the command given, in this case under the bridge . Then the Train itself is an key word. Therefore the child has to follow a lot of processes, plus information carrying words here. Speech Therapists use the “Blank Level” test at levels 1 to 4 which refers to the number of key words the child can process up to age 5. We did these tests on Jay with his Thomas trains and just to confuse me he could do the above test with the coloured trains and the bridge and he did this at four years old! The issue here is if we were using any objects that were unimportant to Jay then he could not do this and pass the test. This much we anticipated and it happened. When we replaced the trains with cups, spoons, and saucers it was way above him. So Language and Language Comprehension is incredibly complicated and what these tests showed in Jay’s case was that he could pass the test if the items used are of interest to him yet not if the items are not of interest.
Lastly my Speech Therapist for Jay wanted me to constantly give him choices and to do it every time he used a gesture to request something he wanted. I’m afraid I refused. The reason was that every time I gave a choice to Jay he would crumble in a heap and cry and get so upset and I soon realised that the choices, where an emotional response was required he went into a meltdown. An example was when I asked him if he would like Mummy or Daddy to put him to bed- total shutdown. I suggest to anyone using a Speech Therapist who asks you to give choice to your child with Autism, if the child responds negatively it may well be overwhelming them. As much as we follow advice, and believe me I did, from many of the professionals I have met, I would say always let your child be your guide! If it upsets them or makes them anxious just do not do it-find another time , find another way- and always report back to the SALT team who work with you and discuss the best way forward. I find that many ideas professionals give are really good and do work but never ever be afraid to speak out if they are not working. We are our child’s voice and whilst they are non-verbal we are their only way to communicate and we know them best!
Next time: The demands made on an Autism Mum- Meetings, Professionals, EHCP’s and Specialists!