Professional Speak Translated For The New Autism Parent 


Picture this: you have some concerns about your child’s development. Perhaps he or she is not speaking much, not giving eye contact, ignoring or over familiar with others or has some behaviours that seem a little repetitive. You decide to seek some professional advice. 

You have now entered the world of ‘professional speak’ where all sorts of professionals will say thing to you that actually have a meaning you may never realise. 
For those just starting out on the autism journey here are some things you may hear a therapist or a doctor say about your child with autism and here is what they might really mean. 

  •  “Let’s see how he goes shall we.” 

What that really means is we reckon you are exaggerating a few things and all will be fine. 

Remember: if your child has autism they will not grow out of it so don’t let this put you off!

  • Shall we discuss this another day?”

Which really means they are hoping to avoid the issue and hope you don’t notice.

Remember: take notes and remind them at your next visit you have something that needs discussing!

  • He/she is very complex.”

Which means that they really are not sure what to do with your child and hoping someone else will take over. 

Remember: if a doctor or therapist says this make sure they are working alongside everyone else dealing with your child so that this is not used as a cop-out. 

  • I’ll see you back in clinic in six months time.”

That translates to they have ticked the box to say they have seen you and they hope whatever the issues were that they will have disappeared by time you get seen again.

Remember: make a note somewhere on when you were seen and start chasing the next appointment in a few months time. Write down your concerns and make sure you are being heard.

  •  “What do you want us to do for you?”

This means they are trying to manage and limit your expectations from day 1 and they are also checking IF they can actually help at all. 

Remember: not every service is right for your child but if you feel a service CAN help push them to do so. Sadly they are often under pressure not to take every case on that is referred. 

  • The next step is for you to attend this course before I can do anything else.

Invariably that will be some sort of parenting course. Sadly it is still endemic to blame the parents before any real issues with the child are even looked at. 

Remember: it is not mandatory to attend any parenting course but often doing them can help and it also shows professionals you are engaging with them. As annoying and insulting as they are at least you can prove you are not to blame. 

  • I was speaking to my colleague about this.”

What this means is they feel they are out of their depth and may be looking to blame a colleague for some new idea or treatment rather than taking responsibility themselves.

Remember: this is YOUR child and if you feel uncomfortable with any professional talking to anyone, be that colleagues or other agencies, then make sure they know! Data protection means you have a right to privacy and confidentiality at all times. 

  • “I was planning to do such and such a test and speak to so and so in due course and get back to you at a later date.”

What this really means is they are delaying diagnosis in the hope at least one other person will state they have not seen signs in your child.

Remember: While basic tests like eye tests and hearing tests are useful and gathering information is wisdom, you can not be left indefinitely in limbo land for too long. It is important if your child does have autism that they get diagnosed and helped as soon as possible. Insist on calling back in a months time to ensure you are not being forgotten. 

  • Have you tried….(fill in the blanks with anything from hypnotherapy, hydrotherapy, ABA, a certain support group in the area, melatonin for sleep and so on)?”

This really means they are hoping you will say ‘ah yes we did this and such a thing is now no longer an issue’ so that they can discharge you. 

Remember: just because something works for others does not mean it will work for your child too. There is no harm is trying a change of diet (providing not harmful) or different forms of therapy, but there is no one size fits all in life and your child may need something totally different. 

  • That’s just all part of autism.”

Ridiculously some professionals seem to think once your child has autism that every other niggle or health concern they have is therefore related even if that is a rash, a headache or as crazy as tooth ache!

Remember: while autism is a complex neurological and developmental condition your child still has a right to treatment for bowel issues, pain and any other medical issues. Do not be fobbed off with the autism card! 

  • You look like you could do with some respite!


This translates as you could really do with brushing your hair and the matchsticks holding your eyes open are rather obvious today.

Remember: if they truly think this make sure they do something about it! Insist they pass that comment on to the right people or explain the process of getting respite!
Finally I will end with this one because of all the comments professionals give me this one angers me the most: ‘

  • We find working with the teachers is a better use of our time that working directly with your child.

Really? What that means is they place way more value on a teacher (who does not have autism) than they do on your child who desperately needs help! 

Remember: while few of us actually enjoy challenging professionals we have to fight for our children. Do not allow system failures to fail your child. 
Whatever therapists and doctors tell you always remember you are the parent. You were the one to raise concerns and you are the one who knows your child best. Make sure everyone is working with you and for you. 
Also note you will sometimes hear those wonderful words we all love so much: ‘

  • “I believe you!”

I hope more of us hear that one than the others! 

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Who supports the parents?

imageAnother letter. Another meeting. You know, the ones where everyone and their dog meets to discuss YOUR child? Now don’t misunderstand me here: I am so grateful for professional input, I appreciate them taking the time to come and I value their opinions (mostly).

The thing is though, they are doing what they are paid to do. They come dressed for the occasion, prepared, fresh and professional. And I just can’t compete with that.

I know I am ultimately the ‘expert’ on my child, but I don’t always feel like that.

I come to the meetings a very different person to them. I am mostly harassed, sleep-deprived, emotional and ill-prepared. I have not had the liberty of having a relaxed breakfast or had 15 minutes to apply my make-up. I have not even have a minute to use the bathroom in peace!

The times are set to meet their schedules, not mine. While I know the challenges involved in getting so many people together in the same place at the same time, I also know there will have been emails flying around, telephone conversations and tweaking of times and days among themselves to find a point of agreement. None of which I will have been involved in yet I am expected to just be there.

And I always am. Because it is what we do as parents and because I know these things are important for my children.

And so the meeting will go on. Each person will say what they are doing to help and support my child and reports will be circulated. It may well be minuted and if I am lucky I may even get a copy. Then they go their separate ways, each back to their own office, or base, or classroom and proceed with their day.

While I go home to cope with the everyday demands of two special needs children. Whilst in school my child appears to be well supported I wonder, not for the first time, about who supports the parents?

We are the ones dealing with the challenging behaviour, the meltdowns, the endless screaming, the not sleeping, the sensory difficulties and the food refusals. We are the ones who do the personal care, fight to get the uniform on and battle to get them to school. When the holidays come we are left alone and everyone at the meeting carries on with their day.

We are the ones fighting with schools, dealing with transport issues, and filling in forms. We are the bottom line and the most important people in it all. Our opinions matter hugely, our insight is important and our knowledge crucial. We should be valued, respected and acknowledged. We are the true professionals, the best experts, and have the most invested in our child. But we also deal with the reality so much more than anyone else.

I love that so many people support my children. But I do wonder sometimes when I watch other families going through the same thing as I do, when I hear so many parents of special needs children struggling with depression or crumbling with the stress of it all;

Who, in all this, is supporting the parents?

Missing the bigger picture

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‘How will that impact on his sister?’, I asked at yet another meeting.
‘We are here to talk about Isaac’, was the reply.
This is the reality of life with more than one child.
In my case both my children have additional support needs, but even if my daughter was ‘typical’ developing she should still be considered when it comes to matters of her brother. The impact on her is just as big, and at times even bigger, than on her brother.
It is all too easy to say, for example, that we have to let one scream, harm himself and cry for hours on end as he tries to push boundaries and test limits. But how does that affect his sister? Or us? Would professionals be able to hear a sibling, or their own child, someone they love dearly, cry in distress for hours and not be effected?

I wish therapists would stop missing the bigger picture.

‘Sorry, we are not able to increase the allocation of supplies despite medical support.’
Another disappointing call updating us on an ongoing challenge we have been having.
People in an office, looking at limited facts on a screen, making a decision based on only the details of that one child with no thought to how this will affect an entire family, and beyond. My son is a number to them. To me he is a precious individual who deserves dignity, respect and to have his basic needs met.

I wish services would stop missing the bigger picture.

A recent visit to a medical practitioner with my children left me with some ‘projects’ to work on over the summer. The only problem is that both children have ‘projects’ that, while increasing their development and skills and helping their medical conditions, they will also both require huge amounts of time and support from me. I also need to be very mindful of the fact summer should be a time of fun, and making memories, and that my children will grow all too quickly. It is very easy for doctors and nurses to suggest health care plans, or developmental milestones to try to achieve, or even to give timetables to implement programmes of therapies. I smile, and leave with yet more literature while thinking all the time, ‘what about my other child?’. My time is not exclusive to one child, even if their needs would call for this, and I also have a house to run and a husband who needs me too. Seven weeks might seem a huge chunk of time to medical trained professionals but it can pass in the blink of an eye when I take into consideration hospital appointments, days out, quality time and household duties.

I wish professionals would stop missing the bigger picture.

End of term is bringing some challenges too, not least the fact my twins attend different schools with very different calendars of activities. The pressure to attend two different sports days, end of term assemblies and prize givings, services and summer fairs can seen rather overwhelming. How do you choose when dates clash? How do you fit in homework, or juggle after school activities with the extra needs that having a disabled child brings. A few times recently I have sent my daughter to school without her reading book, or her packed lunch, or her PE kit. And when school calls I am expected to leave everything to get these things to her, even in the midst of caring duties to her brother. Sometimes I am miles away in meetings, driving or simply changing a nappy. Each school sees one child. And they forget the family is much bigger than that one child.

I wish schools would stop missing the bigger picture.

It is easy for us all to see one thing in isolation: a child crying, a struggling mum, someone sitting alone in a cafe looking out the window. It is all too easy to hear noise from the house next door and come to the wrong conclusion, or berate someone for not keeping their garden tidy when the weather seems nice. Without realising we can be quick to judge or form an opinion, even when we have no knowledge of the background, or circumstances of someone else.

I have lost count the amount of comments I have had on my children because they ‘look fine’ or because they won’t reply to them or give eye contact. People are very quick to comment on the fact my children still use a dummy for bed, or wear nappies or carry a comfort cloth around. There is more going on than you think.

Let’s not be guilty of missing the bigger picture.

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When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.