I’ve got an interesting experience of being diagnosed unexpectedly. A speech therapist of my son was trying to catch my eye 🙂 Ha! 

Than she started asking questions like that was me who demanded her help and finally told me ‘probably… probably you were a bit more lucky than your son so that you could adopt so well without special treatment’ 🙂

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The quantity of autism-specilized therapists is minimal. And I don’t know why. Are our kids so hard to work with? Time wasting is a typical trouble. The waiting lists last for months.

My son starts to use some words. ‘Apple’ is the 1st one. And also he learnt ‘No’ to prevent washing yaaah :)))

Btw ABA principles seem to be very hard to put into practice. Normally we hardly can apply them and seriously modify our strategies. Plan to discuss it with our doctor tomorrow. However what ever we’ve done it works! He speaks. Very-very little. But that’s WORDS anyway. And that’s the communication anyway. And I hope that it’s a very serious step forward.

my son’s first words!

Waiting for a speech therapist (unfortunately there is a long queue we must wait untill 24th May) we’ve started to practice some interventions by our own basing on the books that the psychiatrist recommended to us after Mathvey passed the diagnostics.

There are many-many questions and concerns about that books and recommendations of neuro-typcial specialist in a whole. And I’ll probably write a special post about it.

However we are using the advices with care and normally change much basing on our kid’s specifics. My husband uses his parental intuition (If only I had one!) deciding what fits and what does not.

Today we noticed some success! Our boy uses a word ‘udah’ (that’s Russain ‘kudah’ means ‘where?’) to stop me going away when he wants me to stay with him. That’s a real word and a real verbal communication instead of tantrums and meltdowns! That’s a serious success.

how to represent the diagnosis to others

Another challenge after the acceptance is how to represent the diagnosis to others. Sure you must not talk to everyone staying on the street ‘Hey, I’ve got an autistic child’. However there are people you have to say it anyway. Especially if they are interacting with you child. First of all that’s your parents (the grand fathers and grand mothers). 

I discuss this issue with my neuro-typcial husband. And he says … oh, no! Do not say it like this. Do not say ‘Autism’ it sounds too frustrating and they will feel upset. Say it in another way. No, ‘Autistic spectrum’ sounds frightening. Say ‘autistic disorder of communication’. 

I don’t feel any tints of sense and don’t understand what ‘sounds better’. And it’s hard for me to represent information keeping in mind what other people feel about it and making the ‘representation’ ‘coorect’ in this point. That’s hard because of my own lack of empathy.

I just tell the truth. And the truth is ‘Our beloved boy is in the spectrum’. And we actually do not know yet if it can get better or worse and we must work hard. All of us. And you must work too. So… I am disabled here. I just ask my typical husband to represent this. It’s quite impossible for me to do it in a correct way. 

Acceptance of the diagnosis

Someone can think that if you are in the spectrum yourself it’s easier to have an autistic child and easier to accept the diagnosis. Ok, there are some reasons to think so. Yes I am autistic. And despite I’ve got autism myself I know well that that’s NOT a tragedy. I have family, regular job, regular sex, I’ve graduated from 2 universities and a pretty boy (my son) is sleeping next to me just right now. My life is happy. So I must know better than anyone else that autism is not a thing that has 100 % property of bad prognosis.

That’s true. But there is another thing that I know well about autism. I know how challenging it is. I know how challenging is my own life. Everyday there are so many hard things to do. And everyday I am overcoming. Overcoming misunderstandings, social ‘diplomacy’, social cues that are impossible to meet, overcoming frustration of each wrong step I do. Talking is hard. Asking is hard. Mobbing is hard. Learning is hard especially the one in a group, especially the one that demands learning physical things. Isolation is hard. You need support and help and is not able to ask for it. People often reject you instead of helping. I remember my childhood that finally led me to clinical depression in the age of 12. Autism is hard. I checked. I know.

I’ve got problems with empathy. But I have a very good memory. I know what my poor little boy feels when a psychiatrist forces him to social interaction and takes a toy into pieces. Because I remember this terrible depression and frustration from my own childhood. That’s a terrible feeling of being lost. When you’ve got some pieces in your hands and just do not know what to do for improvement. You kick you head than because pain gives you the relief from frustration and others just blame you for your ‘attempts  to manipulate’. I still don’t understand this point and see no link between my self-injuring behavior and manipulation. However none believes me and that makes the wall between me and the rest of the world thicker.

I am afraid of my child having the same problems that I had in my childhood. And being autistic he would never ask for help. Once when I was already adult I told my parents how our teachers treated us in the classroom. E. g. they easily could heat a boy’s head against the wall or whip us in the classroom despite the corporal punishments were banned in Soviet Union. Being shocked my parents asked me why I had not complained before. I was not able to. Because communication is difficult. Asking for help is difficult. Making a step to a person is difficult.

How can I help my lost boy? How can I find out his needs having lack of empathy myself? And besides it’s not easy to accept that your son can face your own troubles. All of us hope that the life of our kids would be easier, happier, better in any points. And when an autistic person finds out that her child inherits her diagnosis that causes frustration. The worse that one could ever feel.

That’s the blog of autistic mother raising her autistic son. I hope that would be the story of acceptance, understanding and adaptation. 

What for?

— I need to fix this experience for better understanding.

— I need other autistic people and parents of autistic kids to share their experience commenting my posts.

— I would be glad to know that my experience can help other people.